“Okay, Leora, let me take a look at your numbers. Your weight is the same. Your blood pressure is the same. Your heart rate is normal. Tell me more about what you mean by ‘tired,’ like you’re sleeping more or what?”

“I just can’t get out of my own way.”

People tell me this often. I think it’s a New England phrase because I’ve never heard it anywhere else. I have no idea what it really means.

“Do you feel short of breath?”

“Not really.”

“What about sleeping?”

“I don’t really feel any more tired at bedtime than during the day, but it’s bedtime so I go to bed. It might take me a little while to go to sleep. Then I wake up feeling about the same. I think I sleep okay. I don’t wake up or anything. It’s kind of a relief to not have to do anything for a while and just lie in bed.”

I’m wondering if Leora is depressed. I know that Chloe did a two-question depression screen at the beginning of the visit because she is required to do it for everyone, as it is a factor in the quality rating assigned to clinics by Medicare.

I click into the screenings section of the EMR. Leora got a 2. 0-2 does not trigger the longer depression screening tool. She answered “more than half the days of the last two weeks” to “little interest or pleasure in doing things” which I had picked up on just now and “not at all” to “feeling down or hopeless.” I still want to explore this a little more.

“Is there anything you’re looking forward to?”

“Not really. I mean, my life is fine. There’s just not really anything - well, there’s, maybe, um.” Leora paused and blushed and looked down at the floor, then back up. “No, no, not really, but it’s fine. My life is fine. My kids are healthy, my husband is fine, work is not too terrible. It’s all good.”

“Hmm, Leora. That smile is not all that convincing. What’s going on?”

“Well, I feel stupid even saying this because Joel, he’s a good man. He’s a good provider. He’s a good dad. He doesn’t run around. He doesn’t drink. He doesn’t ask too much from me. But….” she paused again and looked at the floor. “Sometimes I feel like I’d like some friends or maybe someone else to talk to. He’s not interested in anything I am. He thinks my shows are silly and when I get my feelings hurt, he always says, ‘Shake it off! Like water on a duck’s back!’ and after a lot of years, I don’t talk to him about my feelings any more. He doesn’t really like me having friends. He says I don’t need them because I’ve got him and the kids. And for a lot of years, I didn’t really. And now I don’t have friends. I don’t want to talk to the kids about my problems. They’re kids and they should get to lead their own lives. And especially now that the twins are starting high school, and with sports and activities, they’re going to be doing their own thing more and more. So, I don’t really have anyone to talk to, you know?

“But that’s not what I came in for today. I came in for being tired.”

She looked up. “You don’t think they’re connected? You think I might be depressed? I guess I probably am. You’re not going to put me in a nut house, are you? I mean, really, maybe I belong there.”

Leora is quiet now, but still not making eye contact. I pause a moment and consider where to start. I’ll want to address some misconceptions she has about depression, offer medications or a specialist referral, offer therapy, and assess for suicidality. I will also want to some labs and make sure the physical things that can look like depression are ruled out as well as the things that can cause plain old fatigue.

I wonder if she needs a sleep study. She doesn’t wake refreshed, but she’s not complaining about her sleep quality. I put that on the list for another day. I am sure she’d feel better with more exercise. I am pretty sure a puppy would help. I don’t see either of those things happening. I wonder about her relationship with her husband.

Leora is crying quietly now. I reach for the box of tissues and hand them to her.

“I’m sorry, Leora, it’s really hard.” I wait quietly for a few moments while she wipes her eyes.

“I didn’t expect that to happen. I don’t know why I started crying. I’m not sad! Not really.”

She starts crying again. I wait a few moments again and then say very gently, “I don’t know, Leora, I think you might be.”

She smiled wryly and giggled. “Not really. My life is fine.” She paused. “I keep saying that.”

“You do keep saying that. I almost wonder if you’re trying to convince yourself.”

Now, she really began crying. “I don’t know why I’m not happy! I should be!”

“There’s no should about it, Leora. You get to feel however you do feel. This sadness might be what’s making you so tired, or it might be something else. Let’s see if we can figure out a plan to help you feel less sad.”

“Okay.”

“You don’t have anyone to talk with about these feelings, huh?”

She’s already told me this, but I wonder if she’ll say more.

“No, Joel wouldn’t understand. He’d say to go for a long bike ride or something like he does, but that doesn’t help me. I don’t have any friends. Joel told me I didn’t need friends anymore when we got married. Honestly, he got kind of jealous if I talked to them or wanted to spend time with them, and so they stopped calling and inviting me to do stuff. Then we had the kids and I didn’t have time for anything but them and home life. You may remember, my parents are gone and I don’t have any siblings. It’s just me, and Joel, and the kids. And now the kids are getting ready to think about leaving the nest. Maybe that’s why I feel this way. Maybe I just need to buckle down and stop being sad. I can do that, right?”

“You can try, but it doesn’t usually work.” I smile softly. “What about a therapist?”

“Joel doesn’t believe in them. He’d make fun of me. He’d say it’s a waste of money even if insurance would pay for it. He’d say people should be able to solve their own problems and not go airing their dirty laundry other places.”

“What do you think about that?”

“Maybe I’d like one, but I couldn’t pay more than like $20 for one. I could only get a bargain basement therapist! Joel never questions what I spend money on, and I get cash all the time at the grocery store to spend on stuff like knick-knacks and fancy coffee and tips for the woman who does my nails. I could take an extra $20 each time pretty easily, but I think he might wonder if I suddenly started taking out $50 more each week.”

“We have therapists here. I wonder what your insurance copay would be. Let me send a message to our insurance guru and ask her how much it would be. We also have a sliding scale, and it seems like a situation like this should qualify, even if you don’t exactly meet the income requirements.”

“I don’t want to give the wrong idea, Doctor Mary. Joel is a good man. He’s kind to me. He just doesn’t believe in therapy. I don’t know. I feel bad sneaking around. To get therapy! But it’s not like I’m doing anything wrong. Or bad. But I’m doing something he wouldn’t want me to do. I’m gonna have to think about this.”

“You are an adult, Leora, and Joel is your husband, not your parent.”

I had not known how Leora and her husband’s relationship worked before this very appointment. I was suddenly way over my head. I am not a therapist. I don’t know how to help guide her through this. It suddenly occurred to me to wonder if she was safe at home.

“I wonder, Leora, has Joel ever been violent or thrown stuff or hit you?”

“Oh, gosh, no! I see where you’re going! No! He’s a good husband. Never. Neither of us ever even hit the kids! He gets angry and never hesitates to tell me what he thinks when I’ve done something stupid, but he’d never be violent.” She sounds defensive.

“Good. I’m glad to hear that. I do wonder though, about your doing stupid stuff, Leora. Would you ever tell Joel that he did something stupid?”

“Oh, gosh, no. But he never does do stupid stuff. I’m the only one who makes dumb decisions. That’s why Joel takes care of the money and pays the bills. Like I said, he lets me get cash at the grocery store for silly things and he never begrudges me when I buy expensive chocolate, which is my favorite, but he pays the bills and writes the checks.” She sounds a little defensive still.

My head is spinning now. This is not my idea of what a marriage should be, but it’s not my marriage.

Leora has seemed content previously at her annual physicals. I didn’t want to remove my attention from her, but I made a mental note to go back and look at her previous depression screens.

Joel seems incredibly controlling. I wonder how far it goes. We talk briefly about sex every year at her physical, but I’ve never gone deeper than assessing her risk for infections. As people get older, I will ask them more detailed questions, but younger bodies tend to work well, and I don’t know what to do if I turn up a relationship issue, so I tend to look away and hope things are good on that front.

“So, what about sex? What kind of partner is Joel in bed?”

“Oh, that’s the thing we are best at, Doctor Mary. Joel was not my first, so I know what I’m talking about - if you know what I mean - and he is by far the best.”

“I’m glad to hear that. What happens if you say no?”

“I’ll tell him sometimes I don’t feel like it or I don’t feel good, and he’s fine with that. We don’t take more than a couple days off, though. We don’t do it as much as we did when we were younger, of course.”

She laughs, and I do, too.

I try to think if I can ask any more questions about exactly how controlling Joel is without making her feel I’m questioning her life choices. She wouldn’t be wrong in feeling that way either and this makes me feel uncomfortable. It’s her life and she can choose to live it the way she is happiest with I remind myself. It’s not my place to agree or disagree with her choices. I feel like her tears today have given me tacit permission to explore a little bit, but I must be careful not to push too hard. I am afraid she’ll return to being defensive and my goal here is to help her figure out what she wants and help her feel better. That’s it. I have to be able to accept it if she decides that maintaining her marriage exactly as it is is the thing that will make her happiest. I have to be sure she understands unequivocally that I am happy to be her doctor and on her side, no matter what she decides. Questioning the details of her relationship with her husband will not promote this. I’m glad she is back to being relaxed with me as we laugh about how much less sex we have now that we’re older.

“How old were you two when you got married?”

“It’s been twenty years! I was 24. At first we weren’t going to have any kids. We spent a lot of years just him and me, but then I changed my mind and he said okay. Then when Joey was two, I asked to have another, and he said okay again. When we found out it was twins, he went and got a vasectomy. I didn’t want to say it, but on top of all the things you worry about when you’re pregnant, I was terrified that I might lose them and we wouldn’t be able to have any more kids. I thought he should have waited until after they were born, but it turned out alright.”

I wasn’t sure how to respond to that story. I was actually Joel’s doctor and knew he’d had a vasectomy, but he had not told me that story. I rarely saw him. He only came in when something was wrong. I decided to change the subject back to her mood.

“You talk about being afraid I might put you in” - I pause - “the nut house.”

“Well, you know, it’s just a way of saying it.”

“I just want to be sure you know that nothing you’ve told me is at all worthy of needing any kind of hospitalization. I can tell you don’t feel great and you’re sadder than you’d like to be, but it’s all very typical stuff.”

“Oh, good. I wouldn’t want to be the craziest person you see today.”

I smiled and paused for a second. “It’s not crazy to be depressed, Leora. Your life is difficult and the way you and your husband have always done stuff is maybe not working as well for you now.”

I’m relieved to see her nodding. “It sounds like a good time to try to figure out what you do want.”

“Maybe just more chocolate.”

“If you think about it and decide that’s what you want, I’ll be behind that 100%.”

“I’ll bring you some, Doctor Mary.”

“Thank you. I do like chocolate.”

I pause to indicate a subject change. “I want to ask you another hard question, Leora.”

“You’ve asked a lot already. Why not add another one?”

I was glad she had such a good sense of humor.

“This is a tough one, and I have to ask it to be sure you’re safe. Okay? Have you ever thought of hurting or killing yourself?”

“Oh, golly, no. I would never do that to the kids. Or Joel, for that matter. If a parent kills themself, the kids have to cope with that for the rest of their life. I’ve seen that and don’t want it to happen to them.” I’m convinced she means it.

“Good. That is exactly right. There are a lot of people - including me! - who would be deeply scarred by your suicide. I’m glad you can see that. If you ever had feelings like you wanted to hurt yourself or kill yourself, I would like you to promise me that you’d call the office or call 911 or call the suicide prevention hotline. Please google it just so you can find it, okay?”

Leora rolls her eyes.

“I mean it! Sometimes things can change and the urge can be really strong. Please promise me.”

She rolls her eyes again. “I promise.”

“Thank you. You’re spending too much time with teenagers, Leora. You roll your eyes so well.”

She laughs.

“So, what would you think about a medication to help with your mood?”

“If Joel would make fun of me for seeing a therapist, he’d really make fun of me for taking a medication. No, thank you!”

My computer flashed. “Oh! I have a message from the insurance checker. She says your insurance would only make you pay a $20 copay for therapy. Can I sign you up?”

“I guess so. I’d rather just come talk to you every week.”

“I know. I’d like that, too, but our therapists will actually be better than me at helping you sort this out. They’re right here on the premises and you can just hand the front desk folks a $20 bill and no one will be the wiser. I think you can even do telehealth so you wouldn’t have to come in.”

I read off her phone number from the chart, “Is this your cell phone? No one answers this but you? Is it okay if we leave a message that we’re calling?”

I don’t want someone to leave a message about scheduling her with a therapist if it’s a phone she shares with Joel.

“Nope. It’s just my phone. I don’t think he even knows the password. I think I’ll change it just to be sure because I bet the kids do.”

She laughs, then gets serious. “I hate feeling like I’m doing this behind my husband’s back.”

“You could tell him,” I point out.

“Yeah, but I don’t think that would be a good….” Her voice trailed off. “I don’t think that would be good for the kids, for one thing.

“Okay. I guess that’s something I can talk with the therapist about. You sure you don’t want to be my therapist?” She laughs.

“I’m sure. But, I’ll be your biggest cheerleader.”

We decided we’d meet again in three months.

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*Every patient in this esstory is a patient amalgam. Any resemblance to real or fictional characters is purely accidental.

**Nothing in this esstory is or should be construed to be medical advice. If you want that, see your primary care doc.

“I told him about what you had said about me and I told him about almost falling on the trail. He asked some questions and said he couldn’t really say for sure about anything because he hadn’t seen me, but he said it sounded like you were about right. He agreed that it would be very unusual for me to get MS at 74. He said my symptoms don’t sound like MS and do sound like Parkinson’s. He said you’re a good doctor and that I should be comfortable following your advice and that if you needed any help from him, you could call him.

“He said he couldn’t be my doctor until I had that appointment in, well, now it’s eight months off, but that you would be able to get me started just fine. So, here I am! Where do we start?”

That was a long speech for Aaron. I was so happy to hear that he had come to accept the idea of having Parkinson. I was happier still that he might be willing to do something about it. Aaron liked to hike, and I was terrified that he was going to fall on a trail and injure himself. I hoped some physical therapy and medications would make him steadier on his feet and keep him safely doing the activities he loved.

I had been worried at our last visit because I thought perhaps Aaron had felt I pushed him too hard to accept the idea that he had Parkinson Disease. I didn’t have any desire for him to accept the diagnosis itself, but it seemed the only way to get him to physical therapy or on meds that might help. I reflected that he had seemed to have a resistance to the diagnosis itself, and I wondered if I may have had an attachment to it, proportional and responsive to his resistance to it. Food for thought, but not what I needed to attend to right now.

It was kind for Doctor Steve to call Aaron. That wasn’t something he got paid for. “At the end of the day” means on his own time after a full day of seeing patients. Most doctors don’t mind doing that from time to time, especially for people they’ve had a relationship with for a long time.

Also, Aaron is not Doctor Steve’s patient, a fact which is crystal clear to Doctor Steve and perhaps not so clear to Aaron. It’s generally a bad idea to give medical advice to someone who is not actually your patient and Doctor Steve was careful to make that clear to Aaron. It seemed like I would like Doctor Steve. I planned to give him a call in the next few months, even if I didn’t actually need advice, just to chat, but back to the moment at hand. Aaron is here for his doctor’s appointment with me so I better get myself here, too.

“Well, Aaron, this is also officially a blood pressure follow-up, so let’s take a look at that and then we’ll get to the Parkinson.”

I clicked into Aaron’s chart and over to his vitals. His weight was stable, his blood pressure and pulse were perfect. If Chloe has a concern or if she’s feeling extra thorough, she will check an oxygen level or a temperature, but today, we have just the basics. “Your blood pressure is excellent today.

“No problems with your medications? Able to get them okay at the pharmacy?”

I learned to ask it this way from a med student. It opens the door for patients to say they are having a problem paying for their medications without explicitly asking that, and potentially embarrassing patients. I learn useful things from everyone!

“Oh, yes! They couldn’t give me the full fill and had me come back a week later for the rest of it, but I’m there all the time anyway.”

People say this frequently and I wonder exactly how much ibuprofen, athlete’s foot powder, and bagged chocolate people are buying because I hardly ever go there, but I’ve not figured out a way to ask this question that seems worth the risk of making people feel defensive.

“Okay. Good. It’s clearly working well. No side effects?”

“I wouldn’t know what to look for! I don’t think so.”

When I start patients on medications, I routinely tell them about the potential side effects - not only the dangerous ones, but also the annoying ones that sometimes cause people to stop the medication. Aaron had been on this medication for years, then took a two-year hiatus while he was depressed following his wife’s death. He is now back on the dose he had before. I wouldn’t expect anything new, but I ask just to be sure.

“Great. Anything else on your list for me today?”

Every once in a while, I’ll fail to ask this and spend a whole visit on the second most important question a patient has. Then as I’m concluding our visit, they’ll mention their most important question and I’ll kick myself all the way into my next appointment which will be starting fifteen minutes late.

“Nope. I just wanted to talk about what Doctor Steve said.”

“Okay. Good. I wonder, have you noticed any changes since the last time we met?”

I hadn’t noticed anything different. He was seated in a chair when I entered the exam room. So far there’s not been anything for me to see.

Aaron looked down.

“Well, actually, yes. The tremor happens more now.”

He pulled his sweater, which had been lying casually across his lap, to the side.

“See, it’s worse. I’ve taken to carrying this sweater around to cover my hand because it’s so embarrassing!”

His right hand was doing the characteristic pillrolling motion.

“I can make it stop if I concentrate on it, like now.” He paused and the tremor stopped. “But as soon as I stop paying full attention, it starts up again.” Sure enough, the tremor started back up when he started speaking again.

“That is very typical, Aaron. The other thing is that sometimes the tremor will stop if someone else touches you.” I put my hand lightly on his arm. The tremor decreased. “Have you noticed this before?”

Aaron blushed, “Actually, no, I’ve not, but that’s interesting!”

It had been three months since I’d seen Aaron last. It seemed as though his disease had advanced a little more than I would have expected in those three months, but disease progression usually happens in fits and starts.

“Parkinson is such an interesting disease, with all kinds of little quirks. You’ll probably find some of them yourself. Everyone is a little different. The most annoying one is that the more you want the tremor to stop, the worse it gets.”

“Yes, I’ve noticed that.” Aaron responds quickly.

“What about walking? Can I watch you walk?” Aaron gets up and walks to the corner, turns with four little steps and walks to the diagonal corner. He looks about the same as he did three months ago, I think.

“Yes, I see, your tremor is a little worse, but I think your walking is about the same.” Aaron nods.

“So, you know what I’m going to say. I think you have Parkinson Disease. It will be a long time until Doctor Steve can see you. Shall we just go ahead and treat you? The downside to my being wrong and giving you meds for a disease you don’t have is not very down. The meds don’t have much in the way of side effects. The upside is that if my diagnosis is correct, you should notice a reduction in the symptoms.

“Alternatively, we could start with physical therapy, or even do both. The advantage to physical therapy, of course, is that it doesn’t have any side effects.”

Aaron smiles at my joke, and I am reminded that he does have that brilliant Parkinson smile.

“Well, I don’t want to take time from the physical therapists that they could use for someone who needs it more, so let’s start with the medications.”

“Okay, but their job is to take care of people who need them. You’re as good a use for their time as someone with a sore knee, Aaron!”

I have previously seen Aaron being worried about taking too much of my time, or someone else’s time. This instinct not to take up other people’s time is a common one among people older than me. I’ve not heard people born after the late 1950s express this idea.

“Maybe, but let’s start with the medications,” he responds.

“Okay, I usually start with the lowest dose. It’s one pill twice a day. I wouldn’t expect any side effects from it because the dose is so low, but the possible side effects are that it can cause nausea, or even vomiting, and it can make your blood pressure drop quickly if you go too fast from sitting to standing. I don’t think I’ve ever caused those side effects with the doses I prescribe.

“The only serious side effect I’ve ever seen in a patient is hallucinations. I saw it a couple times when I was a student. The patient was aware that they were having hallucinations. They weren’t scary or anything, but they didn’t mention them to anyone until their next appointment! So, if you have anything like that, just stop the medicine and call us right away, okay?”

“Hmm. Maybe I don’t want this medication. What kinds of hallucinations?”

“One patient had a painting in their home. The people in the painting started moving. The patient thought somehow the TV had gotten into the painting. He actually enjoyed watching them. The other was a different patient who thought that his wife was not his wife, but a really nice lady who looked like his wife and was a better cook. We lowered his dose and the woman who looked like his wife went away. He was sad because he missed her cooking. These things are really individualistic, but I’ve not had a patient have a scary hallucination. And as soon as they stopped the medication, the hallucination went away.”

“I guess that sounds ok. It doesn’t sound as bad as it did at first.”

“Good. I’ve only seen it in people who are on big doses of the medication and like I said, we’re starting you on the lowest dose. I’ll want you to give us a call on Monday and tell us how you’re doing, okay?”

“Sounds good.”

“You know, now that I think about it, let’s have you take your first dose tomorrow morning even if you are able to pick it up today.”

“So, I’m awake for the first dose. That makes sense.”

I usually tell people explicitly when to start a medication because I’ve learned people often wonder and not take it at all until we call them back and tell them exactly when to start. That can lead to delays or at least unhelpful confusion. I’ve been a doctor now long enough that I know what the common irritating snags for patients are.

I am quiet for a moment in case Aaron has a lingering question or wants to satisfy my burning curiosity about Liz. Aaron says nothing. I am just about to stand up when Aaron says, “Aren’t you going to ask about Liz?”

“I’d love to hear whatever you want to tell me, Aaron, but I was going to respect your privacy.”

Aaron nodded quietly and stood up to open the door to the hall for me, then stood aside so that I could walk through first. Such an old-school gentleman, and also signaling clearly that he was not going to satisfy my curiosity today.

“I appreciate that respect, Doctor Mary. I’ll call the office on Monday to update you. When do you want to see me again?”

I love this ritual of setting up our next appointment. It makes me feel more like our relationship is a chain with links in it, each connected to the one before and after. “Let’s see you back in a month so I can check up on you.”

Aaron smiles that brilliant smile and turns to talk to Hannah.

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*Every patient in this esstory is a patient amalgam. Any resemblance to real or fictional characters is purely accidental

**Nothing in this esstory is or should be construed to be medical advice. If you want that, see your primary care doc.

Aaron was afraid he had MS. I’d just told him that I thought he had something else. That something else was a big-ticket diagnosis - a degenerative, terminal disease. Delivering this kind of news is one of the trickiest and most critical parts of my job.

“Something else? Doctor Mary, I don’t know whether to laugh or cry. I mean, I’ve been so torn up about this, and I didn’t have anyone I could talk to about it! My son, he would just tell me I was being silly and Liz, well, I couldn’t talk with her about it.”

Aha! The woman who had captured Aaron’s heart two years after the death of his wife was named Liz. Liz was, evidently, a neighbor of Aaron’s son. The son had thought, correctly, that Aaron would be happier with a lady friend, but Aaron was now worried that he had developed his wife’s autoimmune neurological condition due to his feelings of guilt at being interested in another woman.

“But what do you think I have, then?” Aaron looked at me expectantly.

“Well, I’m not positive, Aaron, and you’ll have to see a neurologist to know for sure, but I think you have Parkinson Disease.”

I am quiet. I wait for Aaron’s reaction. I need to know that reaction so I can know what information he needs next.

“Parkinson’s? I don’t think so! A man from my church had that. He had a tremor, and you could hear it in his voice. And he had to use a walker and then a wheelchair! I don’t have any of those things. I don’t think so, Doctor Mary. I really think I have MS. MS can attack any part of the brain and cause any kind of symptom. That’s what Doctor Steve said!”

Patients exhibit a variety of typical reactions to receiving a big-ticket diagnosis. Aaron’s reaction is not only not typical, it’s not one I expected from him. I expected that he would simply accept my provisional diagnosis and agree to start treatment. It’s not like the prognosis of Parkinson Disease is all that much worse than that of MS. Why would he be attached to his self-diagnosis of MS?

I knew he wanted to continue hiking. The treatment I was going to offer him would have helped towards that. Instead of working out a treatment plan with him, now I’ve got to convince him that I know what should be treated.

“Okay, let me tell you why I think this, Aaron. I agree; it’s not obvious in your case that you have Parkinson Disease. It’s very early. It’s not like anyone would even notice except a doctor who has been asked to investigate the symptoms you’ve reported.”

“Okay. I’ll listen, but I don’t think you’re right. I mean, I know you’re the doctor and you’ve seen a lot of stuff, but I just don’t have the symptoms Peter did. First, his voice got quieter and his hands got all shaky. He couldn’t write anymore, and he had a hard time drinking coffee in the community hall after services. He stopped going to coffee hour and then even to church. I stopped going around then too because it got too hard for Francie to leave the house, and now it’s just so awkward. But I heard that he can’t leave his house and doesn’t even get out of bed most days. I don’t think I’m anything like that!”

“Well, it’s true, Aaron, you’re not, and hopefully you won’t develop anything like that….”

I let my voice trail off. What can I say? If he’s got Parkinson, either he’s going to live long enough to develop these symptoms or he’s going to die sooner, before he develops them. Neither feels like something to hope for. End-stage Parkinson Disease is not something I want to be talking with him about. Even in the worst case scenario, those are years away. I want to talk with him about the symptoms that he has now. There’s something I can do for them. I can make his life better right now. But Aaron keeps making the topic about end-stage disease. I am left at a loss for words.

“I just wasn’t expecting this,” Aaron says flatly.

I stay quiet, hoping he’ll say more.

“I don’t know what I was expecting. I guess I was hoping you’d say it was a vitamin problem. Are you sure it’s not? My neighbor’s cousin had a vitamin deficiency and once they fixed it, he went right back to normal.”

“Oh, Aaron, I wish it was a vitamin deficiency, but your symptoms are not a good match for any vitamin deficiency.”

I bite back segueing to what a good match for early Parkinson his exam is and stay on his topic. “I really don’t think that’s what’s going on, but we can do some labs after we’re done talking today. We can rule out stuff like that. Or, it’s possible you have both a vitamin deficiency and, potentially, Parkinson.”

I pause slightly in hopes of lowering the intensity of our conversation, and then continue. “If you want, I can tell you why I think you may have Parkinson Disease.”

Aaron sighed. “Yes, yes, I do want to know.”

“So, first off, I have to give you a disclaimer. Parkinson is kind of a specialty diagnosis. I can think you have it and even be pretty sure you do, but we’re going to need to get you to a neurologist to officially get the diagnosis.”

“I would like to see Doctor Steve. He saw my wife. He was such a good doctor to her.”

“That’s a great idea. I can put a referral in to him. Just so you know, neurologists are really backed up right now. You might be able to do a little bit better than most people because I’m sure he remembers your wife fondly, but most neurologists are booking out a whole year and I’m not even exaggerating.”

Aaron looks surprised by this.

“He might not even have much wiggle room because new patient appointments take a lot of time compared to follow-ups, so even if he wants to see you sooner, he may not be able to.”

Aaron raises his eyebrows dubiously.

I don’t have any close friends who are specialists. All of the specialists who are acquaintances that I text and ask for help have stopped being able to see my patients quickly, even in cases where I feel confident they like me and respect my judgment about who is really sick and needs to be seen quickly. I am doubtful that Aaron will be able to get in quickly.

I don’t happen to know Doctor Steve well, but I do know that just recently he sold his practice to the local hospital. The upside for him is that he no longer has to worry about payroll and hiring and firing and organizing staff vacations so that someone was always there. The downside is that he no longer has much freedom to see patients like Aaron that he wants to do a favor for or is really worried about - even after hours. At hospitals, every patient visit must be documented in a particular way. If the visit is not started by a properly trained medical assistant - an hourly worker - it won’t be documented correctly. A doctor can’t ask their medical assistant to stay late to see a special patient because the system is designed to prevent having to pay overtime to medical assistants. It’s also designed to prevent scheduling patients via non-standard means. The reason for that is that other patients could sue, saying they had been denied this special access. And don’t get the administrators started on the liability problems of having a doctor alone in the building after hours with a patient!

None of this stuff about the system is worth getting into with Aaron. I am quite sure that Doctor Steve remembers Aaron’s wife with fondness, and that he will want to work Aaron in quickly if he can. It makes me sad to think that Aaron may misinterpret a long wait as a lack of fondness for him or his wife, but that is not today’s issue, or even my issue. I have already done what I can about that.

“So, Doctor Steve has had way more training and experience in this than me, so I’ll be really interested to hear what he says, but I can give you my thoughts and tell you what I’ve noticed if you’d like.”

Aaron nods again.

“It sounds like you know a bit about Parkinson Disease, but I’m going to start at the very beginning, because it’s a very good place to start.”

I look at Aaron’s face. I’ve made an allusion to The Sound of Music, which I hoped he would get, but maybe it’s too obscure for him. Little things like this can help when, like now, the tension is a little bit higher than I like it. But, no luck this time. It looks like it flew right by Aaron.

“Most people know Parkinson Disease as something that gives patients a tremor.” I demonstrate the tremor with my hand. “But there is more to it than that - and other things can cause a tremor - just for maximum confusion!”

I laugh and see that Aaron has smiled. Thinly. Maybe we can get on the same page again.

“You had the tremor just now. It’s pretty typical that the tremor, especially in the beginning, only shows up when a person is a bit agitated. You remember, you were talking about Liz, right?”

Aaron nods and looks annoyed.

“The other thing that we look for in Parkinson Disease is moving stiffly and slowly. It’s subtle, but when you walk and especially when you turn around, you’re just a little bit stiffer than you used to be.”

I don’t want to say “than normal” - I don’t want Aaron feeling like he’s abnormal - but “normal” is actually accurate. I don’t remember how Aaron used to move. All I remember is that there was nothing to remember. You never want your doctor to think you’re interesting, and his movement was not interesting the last time I saw him. Unfortunately, it is now.

“Can I do a little test here?” I ask Aaron.

Aaron shrugs, “Okay.”

I rest my right hand in the crook of Aaron’s elbow and flex and extend the forearm a couple times. There’s a little bit of resistance, which can be normal.

“Okay. Now, take your other arm and make a big circle,” I tell him.

This distracts Aaron from the arm which I am moving, and when he’s distracted, the arm I’m moving becomes harder to move. It gives me a fair amount of resistance, almost like it’s made out of some space-age stiff material. This reaction is called “lead pipe rigidity” because evidently it’s the way bending a lead pipe feels. I always wonder about this moniker. I’ve never bent a lead pipe. I don’t recall ever touching one. I am confident the person who taught me had never bent a lead pipe either. How long removed is the actual experience of bending a lead pipe from those of us who use the expression?

If I wanted to distract Aaron further, I might give him instructions about the size of the circle or have him reverse directions. Having him tap his leg first with his palm and then with the back of his hand would also work well for the distraction task. It’s amazing to me that the tone of the arm can change so significantly without the patient being aware of it. Aaron’s right arm is quite stiff when he’s distracted.

We switch to the other side. His left arm is relatively unaffected even with distraction. I frequently find left/right asymmetries like this. I find it fascinating. I always test left and right and note the difference.

“This arm moves really easily,” I show him. “And this one is tighter.” I switch back to the right side.

“I can see that, but my right arm has always been stronger.”

The resistance in this patient is strong. Usually patients readily accept what I say. This is really not going well. There is no point in arguing with a patient about this, but that doesn’t mean I shouldn’t give my medical perspective.

“Could be. However, I often see slight differences like this in early Parkinson Disease. It’s really subtle, isn’t it? You can see why I feel like it’s important for you to see a specialist to nail the diagnosis.”

Aaron nods in agreement with me. Finally.

I want to build on this agreement. I want Aaron to know about the medication option. I really think it would make his life better. I am so worried he’ll fall and injure himself on the trail.

“We have a medication for Parkinson Disease. It doesn’t cure the disease, but it reduces the symptoms. We could start a low dose, on the basis of my provisional diagnosis. It works pretty well, and there isn’t any point in putting up with the symptoms you’re describing.”

Aaron nods slowly. I feel as though we might be headed toward agreement.

“I’ll just say my spiel about this, as it will take a while for you to get in with Doctor Steve. The medication is pretty well tolerated. People rarely stop it because of side effects.”

That was really all I wanted to say, but I think it would be weird if I stopped there, so I continue a little longer.

“I would start you on the lowest dose, and you would take it two times a day. In your situation, I am comfortable going up once or twice on the dose if a stronger effect is needed, but usually by then the neurologist appointment has finally rolled around.”

Aaron is now giving me the side eye. Backpedal, back, back. Maybe he’s resistant to the idea of medication.

“I understand you want to wait for the neurologist from the beginning, and that’s fine, but even without an official diagnosis, we could send you for some physical therapy.”

I have always been a fan of physical therapy, but it has a special benefit in Parkinson Disease. It not only makes patients feel better, but it helps them deal with some of the changes associated with Parkinson. I think of it as though Parkinson Disease changes the set point for how loud you talk or how quickly you move, and physical therapy teaches your brain how to overcome that set point by using a voluntary override. Now that I’m thinking of it, I’m wondering whether my sending my patients to do lots of physical therapy is the reason they appear to be progressing more slowly than the statistical average.

No luck with Aaron.

“No, I don’t want to waste their time! I’ll wait for the neurologist to diagnose what’s wrong. The almost falling itself is not what bothered me. I can just use two walking sticks when I hike instead of one. Lots of people do that, even ones who are way younger than me!”

I smile at Aaron. He clearly wants the Parkinson conversation to end. I need to respect that. The sad thing is that his Parkinson Disease won’t respect it. What was left now was to tend to Aaron and my relationship and to encourage him to develop his friendship with Liz.

First our relationship: “Sometimes I use two sticks, too, especially if there’s a lot of steep downhill because my knees can be cranky.”

Aaron responds, “Yes! That’s what I mean! I’ll look for you on the trails, Doctor Mary. Thank you.”

Aaron stands up. I can see he really wants this over with. He steps towards the door.

I’m not ready for him to leave. I want to return to the topic of his lady friend, but it looks like he’s going to get the door open before I can change subjects. I want to do what I can to help him get whatever good things he can get from life.

“I’ll look for you!” I blurt out and make my tone quieter both to indicate a change of subject and because he’s already opened the door.

“I did want to say, though, Aaron, I wonder if your minister might be a good person to talk with about your feelings.”

Aaron stops in his tracks for a moment. “Well, Doctor Mary, there’s a problem with that. Liz is the minister’s mother.”

As soon as he gets that out, he starts walking down the hall. I follow him. When we get to the front desk, where Aaron needs to stop to check out, I meekly tell Hannah, “Please set Aaron up to come back in three months.”

I had walked into this visit thinking we were going to have a brief and routine discussion of a successful treatment of Aaron’s seborrheic dermatitis. I walked out feeling like a failure. I had failed to convince Aaron that he didn’t have MS. I had failed to convince him that he probably had Parkinson Disease. I had failed to convince him that it was worth trying the medication. I had failed to convince him that it was worth trying physical therapy. On top of all of that, I was most sad that I had failed to help tip Aaron’s feelings towards having a deeper relationship with Liz. Treatment of his Parkinson Disease would wait and be available to him in the future. Chances for deep friendship come and go.

Aaron has put himself on his own for the next three months. It’s time for me to compartmentalize all of this and move on to my next patient. I’m now running twelve minutes late. I pass Chloe in the hallway. I think she can tell that something’s gone wrong with Aaron’s appointment.

She smiles at me and says “Mrs. Jones is in room 3. Her blood pressure is great.”

<Next>

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*Aaron and every other patient is a patient amalgam and any resemblance to real patients is accidental.

**Nothing in this esstory is or should be thought to be medical advice. If you want to know if you doctor finds your gait interesting, please go ask them.

Previously

First, I’m not supposed to be the one to provide the diagnosis**. That’s the job of a specialist: a neurologist. What I’m supposed to do is set up the referral and be a bit vague with Aaron*** about my concerns. I can explain to him what elements in my exam are giving me concerns, but I shouldn’t make a diagnostic conclusion. That’s not my role.

Even more, I should not be treating what I think is Parkinson Disease. I shouldn’t be treating it at all. A neurologist should be. Right after they diagnose it.

This is all perfectly correct in theory. It’s the right way to do it - except for one practical consideration: there’s a massive, nationwide shortage of neurologists. We have gone decades underproducing them. Even here, in the greater Boston region, where we have one of the highest ratios of doctors to patients in the country, the time between making a referral and actually seeing a neurologist is about a year. It’s much worse in other parts of the country.

It’s not hard to figure out why there’s a shortage. It’s a poorly paid specialty because for decades the various insurance programs have centered procedures as the basis for compensation. Thinking is not something doctors get paid for; we mostly get paid for doing. Because of this, compensation for neurology has become terrible in comparison with other specialties despite the fact that neurology is an intellectually more demanding specialty than many others. It requires exceptionally good skills in detailed observation and careful reasoning. It involves lots of thinking - and no procedures.

I’ll, of course, refer Aaron to a neurologist, but he is suffering right here and now. If Aaron is willing to take the chance that I am incorrect about his diagnosis, there are things that can be done that will improve his life while he’s waiting for his neurological appointment. To do them, he needs to understand what’s going on, and I’m going to need to explain it to him, uncertainties and all.

While I can’t give him a diagnosis of Parkinson Disease today, I can give him a diagnosis of “Parkinsonism,” which means that he has symptoms consistent with the disease, but there are other possible causes. Those are unlikely, and I don’t think I need to address them. What we know is enough to justify giving him a trial of the medication used for Parkinson Disease. If his symptoms get better, that will increase my confidence that he has the disease. If his symptoms do not get better, it will be a long wait to see a neurologist who can figure out if that’s because he has something else, or because there is an unusual reason he did not respond to the meds the way most people do.

This is not something I have much practice in. While I have had many patients with Parkinson Disease, I rarely diagnose it. Not only because I’m not supposed to, but also because patients with Parkinson Disease live a long time after diagnosis, statistically, about ten years, but in my experience, much longer. And seldom does anyone die of Parkinson Disease. It’s a late-in-life disorder. Usually one of the typical old-age causes of death, such as cancer or heart disease, will arrive before Parkinson becomes terminal.

We can’t cure Parkinson Disease. We can’t even slow it down. All we can do is treat the symptoms.

It looks like Aaron has symptoms that we should try treating.

My mind floods with everything I know about Parkinson Disease. I have to sort out what’s relevant and helpful for Aaron from the torrent of facts I have. And for this essay, I have to organize what’s going on in my mind into a coherent story so readers can follow it. That’s not how it actually happens. It appears in my mind all jumbled, with most parts reliant on background information that I know but the reader won’t. This story was very difficult to write because it’s really not a story at all, but a braindump. I started with a really long, fragmented, redundant, stream-of-consciousness draft that took multiple re-workings to become anything anyone would want to read. The result isn’t nearly as jumbled as what actually goes on, but at least it conveys how I go about evaluating all of the thoughts that come up.

On one hand, I have to decide what’s relevant to the symptoms Aaron is exhibiting. On the other hand, I have to decide what’s helpful to tell Aaron. I have only a few minutes left in his twenty-minute follow-up appointment that is nominally about his dermatitis, which, incidentally, is one of the possible symptoms of Parkinson Disease. I have to deliver big-ticket, life-changing news about something that’s not my specialty in the time allotted for a nuisance condition.

I learned a bunch of things in medical school about the disease. The underlying cause was the loss of dopamine-synthesizing neurons in the substantia nigra of the brain. Getting the disease was mostly random. Maybe it’s related to genes or an environmental exposure or just plain wear and tear. The hallmarks of the disease are rigidity (stiffness), tremor, and bradykinesia (slow movements which sometimes get so slow they cause a person to stop, an action called “freezing”). It also causes problems in the autonomic functions (like stooling, urinating, and maintaining blood pressure), cognition, and the senses (vision and smell). Either we were not taught a theory for why this happened, or there may have been one and I got that question wrong on the test. There’s a reason this gets referred to specialists.

Since I graduated long ago, we have developed some new ideas.

While the disease still has the same hallmarks, we now recognize that it has what we call a “prodrome”: early signs that can appear several decades before onset. These prodromes include constipation, loss of sense of smell, and a REM behavior disorder involving loss of paralysis while dreaming, causing people to act out their dreams.

The fundamental problem is now understood to involve a submicroscopic protein called “alpha-synuclein” getting misfolded. When it folds incorrectly, it begins functioning incorrectly, impairing the production of dopamine. The impaired production of dopamine feeds back and causes more alpha-synuclein to fold incorrectly, and this causes more dopamine depletion.

Before we figured this out, we discovered that parts of the brain develop Lewy bodies in Parkinson Disease. These can be seen under a microscope. We used to think that maybe these Lewy bodies were the fundamental cause of the disease, but further investigation revealed the issue with alpha-synuclein.

Alpha-synuclein is found throughout the brain. This explains why the disease often includes symptoms that seem to have nothing to do with dopamine, such as difficulty regulating blood pressure, bowels, and other autonomic functions.

Why the alpha-synuclein misfolds, we don’t know. We have yet to find a root cause for the disease. We’ve learned that there is some genetic predisposition to the disease and that an environmental exposure seems to be involved. There are geographic areas with clusters of Parkinson Disease. Exposure to some pesticides, chlorinated solvents, and air pollution seems to increase the probability of getting the disease. Traumatic brain injury compounds these risk factors. Another known risk factor is a chemical that can be synthesized accidentally when things go wrong in the making of designer heroin. There were seven cases of this in northern California in the early 80s.

None of that’s likely relevant for Aaron today. The bit about pesticides might be interesting later, but not today.

The treatment is to provide the brain with a substance that it can convert into dopamine. This is somewhat, but incompletely, successful. More importantly, it does not slow the disease down; it simply treats the symptoms.

The brain is very particular about what it allows to pass in from the bloodstream. If one were to simply eat or infuse dopamine, it would stay in the rest of the body and never make it to the brain.

Levodopa, a dopamine precursor, is able to pass into the brain, and the brain readily transforms it into dopamine. Unfortunately, the body is also very good at transforming levodopa into dopamine, so only about a quarter of the ingested levodopa dose makes it into the brain.

Too much dopamine in the bloodstream can lead to nausea, vomiting, and orthostatic hypotension (low blood pressure when you go from sitting to standing). These side effects limit the dosage of levodopa that patients can tolerate.

To get around those limits, there’s carbidopa, which inhibits the enzyme that transforms levodopa into dopamine in the body (but not the brain). Taking carbidopa with levodopa keeps the body from converting levodopa into dopamine, allowing more levodopa to make it into the brain. Carbidopa and levodopa come together in a pill.

If I diagnose a patient with Parkinsonism, like I’m doing with Aaron, while they’re waiting to see a neurologist, I recommend starting them on carbidopa/levodopa to reduce their symptoms. It’s a tricky medication in that it is very sensitive to timing, and in ways that can be idiosyncratic to the patient. People with advanced Parkinson Disease will often develop complicated medication regimens, sometimes even waking at a particular time in the middle of the night to take their medications. If they are hospitalized for any reason, their regimens can get disrupted and their symptoms worsen.

The most complicated regimen I personally have seen had a patient taking his meds five times daily. Despite having advanced Parkinson disease, he was able to do most of the basic things about taking care of himself. When he was hospitalized for pneumonia, the admitting doctor thought this schedule was ridiculous and consolidated him to three times per day. The patient had a significant relapse, and between his pneumonia and suddenly worse Parkinson Disease, he became so impaired that he could not explain what had happened to the hospitalist. His situation was so dire that the hospitalist set up a palliative care consultation. That’s where I was called in. I recognized what had happened, restored his med timing, and made an all-caps addition to his hospital med list about the timing of medications. The next day his symptoms reversed and soon he was discharged from the hospital.

This issue with timing is important, and Aaron will likely need to know this at some point, but probably not until he is a few years into treatment.

Oops. I have gotten way ahead of myself. I need to be thinking about what Aaron needs to know today.

I think Aaron will be interested in knowing that treatment exists and is readily available in pill form. Anything more than that is overwhelming detail that is best saved for when he needs it in the future.

Aaron will want to know why I think he has Parkinson Disease.

I look for rigidity, bradykinesia and tremor when I start to suspect Parkinson Disease. I have seen evidence of them all in him.

I often try to elicit stiffness (rigidity) in a patient by passively moving their joints while distracting them. I have not done that with Aaron yet. He has already shown us some tremor when he became a bit emotionally agitated by talking about a woman that he was interested in romantically. The emotional agitation was both that he had romantic feelings towards her and that he had guilt because of a sense of being unfaithful to his deceased wife. A tremor that increases with agitation is a common feature of Parkinson Disease.

The expressionless face is a manifestation of bradykinesia. The voluntary facial muscles move slowly (bradykinesia) and are rigid. I probably won’t point out the changes in his face to Aaron. I think that would make him feel uncomfortable.

Going forward, it will be relatively straightforward to determine if a tremor is getting better or worse with an intervention. The rigidity and bradykinesia will be more difficult to evaluate. It’s not like patients will arrive on a dolly, wheeled in by their partner because they’re completely rigid and after the intervention they’ll be able to flex their hips by ten degrees. The manifestations and improvements will typically not only be subtle, but subjectively variable.

What people do in their daily lives, and how they do it, differs a lot from person to person, and which activities matter to patients varies greatly. Two people with similar symptoms may have very different pain points due to differences in their physical environment and what is important to them. A person whose main pleasurable activity is walking their dog will make different complaints than a person whose main hobby is painting miniature portraits, even if they have the same physical findings. You can’t just measure symptoms; it’s important to find out how the disease is affecting the patient.

I see that I’m now working on a lecture I would give a medical student and not what I need to tell Aaron.

Aaron is bothered by his unsteadiness on the trail, yet in his exam his gait symptoms are minor. He has an obvious tremor, but doesn’t even think to mention it. In the future, I will want to inquire about the frequency of his almost-falling episodes. Asking about his tremor will not elicit useful information. Even complete elimination of his tremor will not improve his life since it’s not bothering him.

This is all important for me to keep in mind, but it’s not something Aaron will likely find relevant.

I see the typical anticipatory Parkinson Disease gait as a manifestation of rigidity. If you consider the way normal walking works, we keep our center of balance above our legs and are carried forward mostly by pushing with our feet. When we walk on ice, we can’t push with our feet. There, we have to just move our legs while keeping centered over them. When we run, our center of gravity is ahead of our legs. We keep ourselves from falling by repeatedly thrusting a supporting foot out in front.

A person with a full-blown Parkinson Disease gait does not push themselves off, but rather propels themself forward with more of a running stance, while at the same time the flexibility to bend the hip in order to swing it forward and potentially to bend the knee and lift the front of the foot up to avoid obstacles are all impaired. The result is a shuffling, leaning-forward gait that, in an uncontrolled state, gets faster and faster as the person builds up more and more momentum.

This gait is unstable. The patient will either fall forward or intervene by slowing down or leaning backwards. However, because of the disease, they cannot properly lean backwards. So, they often overcorrect and fall backwards. Most of the time, though, they can’t keep up with themselves and fall forwards.

Aaron will find this interesting at some point, but not now. It will fit in well when I try to convince him to go to physical therapy, which is an important part of the treatment plan, but I don’t have time to cover that in this appointment. That will be in his next appointment.

The way movement is generated in the brain is not very well understood, but some kinds of motion seem to have different beginnings than others. For example, smiling and laughing are somewhat involuntary movements that are not affected the same way in Parkinson Disease as completely voluntary movements like walking. The relative rigidity and bradykinesia of the voluntary muscles of the face combined with the normalcy of an involuntary smile is what leads to the brilliance of a Parkinson Disease smile.

Oops. I already know that I don’t want to go there with Aaron. I don’t want to make him feel self-conscious.

My observation is that for many patients with Parkinson Disease, even those whose motor manifestations have progressed so far that they cannot walk, the most troublesome aspect of Parkinson Disease is the constipation.

This is something Aaron will discover for himself in the next few years. No need to talk about it now. I’ll ask him about it at our regular follow-up appointments.

The progression of Parkinson Disease is interesting. I have seen patients in the early stages who have had only minor worsening even after several years. I have treated patients in the advanced stages, even to the point where they have died from their disease. But, strangely, I have never had a patient progress through these stages under my care. I don’t think this has anything to do with me. I think it’s just a coincidence that it has just never happened while I’ve been watching.

I have taken care of many patients who have had mild Parkinson Disease for years. Their condition looked more like a nuisance than something that really impacted their lives. OpenEvidence (the doctor AI site) suggests that if a patient’s condition does not worsen over ten years, perhaps the diagnosis is wrong. That is, of course, always a worry. A more likely possibility is that my patients are progressing and I don’t notice it. They might not be telling me about it. They might not even be aware of it themselves. The physical therapy they have done might be working very well. Their neurologist may have escalated their therapy and I have not been paying scrupulous enough attention to notice. It’s also possible that they were diagnosed exceptionally early; however, I reject this possibility because they came to me complaining of symptoms. I don’t think I was catching them before they had clinical manifestations, but maybe I was.

This kind of second-guessing and reweighing the odds of all previous diagnoses is something that always goes on in the background of a doctor’s consciousness.

I start thinking again about how the disease progresses. This is a disease that may well kill Aaron. In some cases it causes serious disability in every single aspect of moving - and as far as we can tell - all aspects of thinking. While my longterm Parkinson Disease patients have had what looks to me like relatively benign courses, I’ve seen advanced Parkinson Disease. It looks like a condition that is specially designed to be unpleasant for someone like me. I’ve not been able to talk with anyone with it to find out what it’s like for them because the disease has destroyed their voluntary movements, including speech. The more they want to say something, the more emotional charge something has, the less able they are to say it. They cannot communicate, feed themself, toilet themself, ask for what they need, or even say thank you. It seems like a terrible way to go.

Whoa! I am getting way ahead of what I need to talk with Aaron about. I see no benefit to Aaron of telling him the full depressing breadth of the disease I think he has, or why I think advanced Parkinson Disease is a particularly cruel neurodegenerative disease. This is my angst. None of this is relevant for Aaron.

I remind myself what the literature says: that the average course, from the time of diagnosis to death, is about ten years. However, most people with Parkinson Disease do not die from it. They usually die from other things that older people die from. The disease is not very likely to shorten their life, but if it does, it will do so by causing aspiration pneumonia. This means that the person cannot swallow food, liquid, or eventually even their own secretions properly. Their saliva ends up in their lungs and causes infections. After a few rounds of this, most people succumb.

What I think Aaron will want to know is what has caused his condition, what we can do to make the symptoms less noticeable and slow the progression of the disease, and what to expect in the near future. He’ll probably want some idea of how serious a diagnosis this is. All of these issues need to be framed with the fact that I’m not absolutely sure of the diagnosis and I’m not the one who is supposed to make this diagnosis.

I start thinking about the protocol for disclosing bad news. Its acronym is SPIKE. For the actual disclosure, I like to give the news in a single, simple sentence, then answer the questions that the patient has rather than providing a lot of information up front. The idea is that this allows the patient to control the amount and speed of the information. But with the patient in control, the conversation can go anywhere.

Sometimes what a patient thinks is the most salient fact about a disease is surprising to me. Sometimes patients are so shocked that they cannot absorb more than a sentence or two. If there are facts that I think they absolutely must have, I will wait until they seem to have exhausted their questions before offering those.

If I know before I go into an appointment that I am going to disclose bad news, I try to arrange an appointment time that can last longer than scheduled without affecting other patients. I also try to alert my assistant so she can head off any potential interruptions.

I had no idea Aaron was going to bring this to me today, and so whatever pileup of patients might occur behind him will simply have to sort itself out. This is one of the downsides of being Doctor Mary’s patient.

I organize my knowledge of Aaron’s personality, hopes and beliefs, my experience and reading about Parkinson Disease, my experience giving bad news, what I have seen of Aaron’s symptoms, and my own thoughts into a cohesive package. I take a deep breath, look Aaron in the eye to be sure we’re connected, then look down to turn the intensity down and say….

>> COME BACK NEXT WEEK TO HEAR THE CONVERSATION WITH AARON <<

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*The disease used to be known as “Parkinson’s Disease.” While the apothecary, James Parkinson, was the first to systematically describe the disease, discoverers of diseases are not considered to own them. Hence, it has become passe to use the possessive in names of diseases.

**Aaron is a patient amalgam and any resemblance to a real or fictional character is purely coincidental.

***Nothing in this esstory is or should be construed as medical advice. If you want that, go ask your primary care provider what’s going on in their head.

<Previously>

“You probably don’t know, but I have a dream to climb Mount Washington. I’ve lived in New Hampshire my whole life, and I was always too busy with the cows when I was a young fellow to do it. We sold them all when my wife started getting sick, but then I didn’t have anything on my mind besides taking care of her. Now, I have all the time in the world and a friend who knows about hiking, but I’m beginning to feel like I’m never going to get to the top.

“I don’t know why, but I seem to be getting really clumsy all of a sudden, and I keep tripping and almost falling, and I’m afraid I’m going to injure myself if I trip on a trail. I wanted you to see if maybe I had a vitamin deficiency or something that was making me so clumsy like.”

I had seen Aaron a month ago for an annual blood pressure follow-up. At the very end of his visit, he pointed out his seborrheic dermatitis. This was officially a follow-up on that, to see how the treatment was working.

The last time I saw him, I had noticed that he had used his arms to get out of the chair and I wondered how much his strength had declined. I had planned to look for an opening to talk about his losing strength. Now he has given me one.

I also recalled that I had made a joke about Aaron not coming to his next appointment and thought I may have mildly hurt his feelings. I made a mental note that he may have hurt feelings operating in the background.

“What happened the last time you fell? What were you doing?”

Patients are often unable to provide helpful generalizations about what they are doing when they have symptoms. It’s usually more productive to ask them about a specific incident. The most recent or the first is usually most memorable.

“I was doing an easy hike with my friend. Mount Willard. You know it, I think. It’s short and steep, but it’s otherwise easy - not rugged at all.”

A flash of affection for Aaron zipped through me. We hadn’t talked about hiking since before his wife died, yet he remembered that I love to hike. He is that kind of considerate.

“No scrambling, just a steady climb to a great view. It’s a lot of reward for a little bit of work. I don’t really know what was happening. I was walking and the next thing I knew it was like I couldn’t keep up with my body! I laughed it off and picked myself up - nothing hurt but my ego! - and walked on. I didn’t want my friend to worry about me.

“Oh, all right. I’ll tell you. It was a lady friend, and I didn’t want her to think less of me. She didn’t know about the other times I’ve almost fallen recently, so she didn’t make a big deal out of it - thank heavens! The other times were all kind of the same. I’m walking - and then I’m saving myself from falling.

“What do you think it is? I mean, it might be that I’m getting old, but it seems like it came on kind of quick. Old age should just come on one day at a time.”

Aaron smiles at his joke and his radiant smile transforms his face. It is as though all the light came on inside him at once. Suddenly, I have a sinking feeling. I’ve seen that kind of smile that lights up the room and seems to come from nowhere. It’s a symptom - a symptom that goes along with Aaron’s uncharacteristic clumsiness. I’ve seen it with patients with Parkinson disease.

I start thinking about other signs of Parkinson. Aaron is negative for having a tremor, but positive for the falling and the expressionless face. And his new seborrheic dermatitis? That also goes along with Parkinson.

I gaze at his eyes, looking to see if he has a decreased rate of blinking - another sign of Parkinson. I use myself as a control. I wait for him to blink and blink with him, then I watch to see when he blinks relative to when I do. I’m doing this while we are talking. Aaron is completely unaware that I am collecting data and running experiments as we have a conversation.

“Well, I have some ideas, Aaron, but I don’t want to jump to conclusions or anything. Let me examine you a little bit, watch you walk, you know, poke and prod and then I’ll tell you what I think. Okay?”

“Sounds good. You want me to walk?” Aaron good-naturedly stands and starts walking. I couldn’t stand it and blinked before Aaron did, and I noticed that he had not yet blinked when I lost eye contact with him when he stood up. A sign.

I point to the corner. “Go stand in the corner, young man,” I laugh. I watch him walk to the corner. His gait is normal, balanced, relaxed. I don’t see anything out of the ordinary. This is reassuring.

“Okay. Turn around, please, and walk to the other corner.” I gesture vaguely to the opposite corner.

I watch him turn. Normally, a person, when asked to turn around, will do it smoothly. They’ll externally rotate one leg, transfer weight to it, catch the other foot up, and repeat. In a constrained setting like an exam room, they’ll split that maneuver into two or maybe three segments to do it in a smaller space. This is exaggerated in a person with Parkinson. They will make many small shuffling moves to turn around, often as many as five or six. Aaron makes five.

I watch him walk again. A person with Parkinson often has a characteristic walking stance, leaning forward and almost holding themself back by pushing their toes into the ground. (Try it. Stand up and lean your whole body forward. As you lean further forward, your toes push down into the floor. If you lean further forward, you will start to fall and take a step with one of your legs.) It is called an “anticipatory gait,” and people sometimes will start walking faster as they walk farther because they keep leaning forward and walking faster and faster to keep themselves from falling. A person with Parkinson will often fall because their body cannot keep up with the pace required by their stance. This same anticipatory stance causes them to shuffle their feet - there’s not time to pick their feet up and take a full stride before they start falling forward.

I don’t see that stance in Aaron - well, maybe just very subtly.

“Okay. One more time, please.”

I watch him turn. Again, five tiny shuffles of his feet.

On his way back across the room, I watch his arms. The exam room is small, and he doesn’t get to build up a good speed, but I can get some idea. His right arm swings normally but his left does not. Another sign.

None of this definitively points to Parkinson, but collectively they make me concerned. Parkinson is a movement disorder, and Aaron is exhibiting several abnormal movements.

In most cases, the initiating event for Parkinson is not understood, but for some reason the patient begins losing cells in an area of the brain called the “substantia nigra” (dark substance) - the area that produces dopamine. With less dopamine available, the patient often becomes apathetic and depressed - ut-oh, that’s another sign for Aaron, but he’s also just lost his wife of many decades.

The lack of dopamine can cause a resting tremor. The tremor is called “pill-rolling” because in its most common form, it looks like the person is rolling a pill between their finger and thumb. The tremor usually starts on one side and eventually progresses to both sides. This tremor is usually the first symptom a patient notices about Parkinson.

The falling Aaron describes is not a common symptom, but not many people at the onset of Parkinson are out hiking on steep rocky trails.

I don’t know if Aaron has Parkinson or something that looks like Parkinson or if there is something else altogether going on. There are a number of other conditions that can look like Parkinson. Most of these involve the same region of the brain, but have a different mechanism, sometimes different presenting symptoms, a different progression, and a different response to medications.

The easiest of these to understand is a stroke. If the substantia nigra has lost part of its blood supply and died, a person can get symptoms that look like Parkinson disease, but they will not respond to the medications. A stroke in the area downstream from the substantia nigra can also mimic Parkinson disease. Often, we will already know that the patient has had a stroke in this area. If I have any question, a head CT will reveal more information. Aaron has not had a stroke that we know about, but I make a mental note that we might want to get a head CT to be sure.

The “correct” way to find out if Aaron has Parkinson is to have him see a neurologist. In my area, it takes over a year to get an appointment. If he has something treatable, that’s a long time to delay treatment. The usual medication for Parkinson is safe for most people. If I suspect a patient has Parkinson, I will often just start them on the medication and see what happens. One downside to this is that when the patient finally gets to see a neurologist, they won’t have symptoms and the neurologist will conclude that they don’t have Parkinson and that they should stop the medication. When they do so, the symptoms come back, and getting a follow-up appointment with the neurologist takes a couple months.

Diagnosis and, certainly, treatment of Parkinson disease is not supposed to fall onto primary care doctors. What I do here is something I developed through trial and error, as a workaround to the system failure. I have a harm reduction approach whereby I consider if it is more harmful to my patients to have the disease and not get treatment or to get treatment for a disease they don’t have. In the case of Parkinson disease, where the symptoms can make life difficult, and the treatment is largely benign, I err on the side of treating. So far, I have not been wrong, but I do my best to make it clear that I’m just doing what I think is best under the circumstances.

But before I tell Aaron that I am worried he may have Parkinson disease or something similar, I need to talk with him some more. Maybe he already suspects he might have Parkinson disease. This would make the conversation easier.

“So, Aaron, do you have any ideas about what might be going on?”

“I’m not a doctor.”

In my experience, that’s an intentionally evasive answer. The patient does have an idea. They just don’t want to come out and say it - a reluctance that could have any of many causes.

“True, Aaron, but I bet you know how to use the internet. Did anything seem like a good match to you?”

Aaron avoids my gaze. “Well, yes, but I wanted to hear what you said.” He sighed and paused. “I’m afraid I have multiple sclerosis. My wife, you know, she had it and, and, and, I just started seeing a lady friend. She’s the first one since Francie died two years ago, and I know she wouldn’t want me to be alone forever, I mean she even said that she wanted me to find someone else, but I feel so guilty that I’m afraid, I’m afraid I’ve given myself MS!”

Wow! That was not what I was expecting. I was pretty confident he did not have MS. His exam was not consistent with MS, and men rarely develop MS at 75.

But this issue about MS was not the most important thing in what he said for me to address. Could I help Aaron free himself from a little of his guilt? He had said his wife had okayed a new love for him.

Besides, I was concerned he had a different serious condition - and now I had an additional concern about it. As Aaron had talked about the MS, a wave of strong emotion had come over him, and his right hand trembled. Aaron noticed me looking at it.

“Oh, this!” he said, “I’m such a wreck that my hand does this whenever I talk about her. It’s funny, though; being with her makes me feel all relaxed and my hand never does this when I’m with her.” Aaron smiles, “She’s such a good woman. She’s my son’s neighbor. He even introduced us. You’d like her. My son, he said that if I had a lady friend, I might be happier again. Maybe I’d stop moping around getting underfoot all the time. It did happen that way, but I have such guilt, too.”

My mind is racing trying to put all the priorities in order: address his guilt, reassure him he doesn’t have MS, and sort out what he does have. The third priority would involve examining him a little bit more and maybe asking some questions, deciding how sure I am about his diagnosis and what I want to communicate to him about it, actually telling him what I think is going on, and making a plan with him.

As for addressing his guilt, that is not, strictly speaking, a doctor task. Long ago, in a previous job, I was criticized for talking with patients about issues that a social worker could have handled. That criticism still stings a little bit. I wonder if this stoic, old-school farmer would even be willing to talk about these things with some young female social worker he had just met. I have to prevent myself from laughing out loud as I consider the question. If his guilt was going to get addressed in our clinic, I’m the one who would need to do it. But his guilt didn’t seem to the the number-one priority, and there were people other than me who could address it. At the end of the appointment, I’d suggest Aaron talk with his son about his guilt feelings. My top priority needs to be to reassure him he doesn’t have MS, and that instead he probably has Parkinson Disease, but I can’t be in a room with suffering and not at least point at it.

“But your wife said that she didn’t want you to be alone. She knew you best and didn’t think that would be good for you.” I paused briefly, long enough for it to sink in, but not long enough for him to respond because I wanted him to respond to this next question: “What if it was reversed? What if you had gone first? Would you want your wife to be alone for the rest of her life, or if she could find someone who helped her be less lonely would you want her to spend time with them?”

“Well, of course, I would want her to have a friend, but it feels different for me.”

“I can see that, Aaron, but it sounds like even your son recognizes what makes you happier. There’s not really any point in avoiding the happiness you can have – and give! You’re making your lady friend’s life nicer, and it sounds like your son’s too!”

I laughed and Aaron smiled there. Again, the smile lit up his face so brightly. I have always loved the smiles of people with Parkinson, probably because they feel so completely authentic, but I hated what it meant in this case. I realized that I was stalling. I didn’t want to tell Aaron the bad news. My mind was already leaping forward to envisioning Aaron with full-blown symptoms. I had to shake that vision off - like a dog shakes off water after a swim. I took a deep breath.

“I don’t think you have MS, Aaron.

“There are a lot of reasons I don’t think you have MS. It’s really rare for a 75-year-old man to get MS, for one thing, and your symptoms aren’t at all like MS for another, but the main reason is that I think you have something else.”

>>COME BACK NEXT WEEK TO HEAR MORE ABOUT PARKINSON DISEASE AND AARON’S VISIT WITH ME<<

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*All characters are amalgams and any resemblance to real or imaginary characters is accidental

**Nothing in this is or should be construed as medical advice.

Inside, I sighed. I had thought I’d have enough time to make myself a cup of tea before seeing my next patient. It was now looking like I might be lucky to get a glass of water.

“What’s that, Aaron?” I sat down.

Aaron was a kind man in his mid 70s who was starting to come out of the grieving period after his wife’s death a couple years ago. I enjoyed his visits because he exuded warmth and kindness in a completely sincere and straightforward way. I saw him infrequently. He had high blood pressure, but had let his prescription run out after his wife’s death. He ignored our phone calls for a couple of years as he didn’t see the point of taking care of himself now that the light had gone out of his life. About six months ago, he had started to return to life and wanted to return to controlling his blood pressure. This was our third visit since his hiatus. He was quieter and less expressive than he had been while his wife was alive, but I still looked forward to his visits. I wondered if this was a permanent change or if this was the tail end of his grief over his wife’s death. I had seen grief after a spouse’s death play out both ways. One of the best parts of this job is watching how different people respond to life events. Time would tell with Aaron, as it will with all of us.

When, at the end of an appointment, the patient says they have one more question, that “one more question” is usually the most important thing on the patient’s mind. It can be anything - except what the appointment was about - such as “please help me understand my cousin’s medical diagnosis” or “I think I have lung cancer” or “my family member thinks my memory is slipping.”

“It’s not a big deal, but I am really annoyed by my dandruff, and I wondered if you have anything stronger than what they sell at the drugstore.”

This should be an easy one. I’m glad Aaron isn’t worried about something complicated. I might yet get that cup of tea.

“Well, let me take a look at your scalp, Aaron, and see what I see. What stuff did you get at the drug store?”

I motion to Aaron to sit on the exam table. I observe him stand up and walk. He had lost so much strength since his wife’s death that he now needed to push against the chair arms in order to stand. I didn’t recall that from last visit, but I might not have been looking at him when he stood up. Aaron had been a dairy farmer. When he was young, he was probably made completely out of muscle. I’ve been his doctor since his late sixties. Back then, he was still well-muscled, although he had developed a gut. A couple years of isolation after his wife’s death had caused him to lose the gut and much of the muscle as well. His weight had been stable to slightly increasing over the past six months, so I wasn’t worried about his nutrition or that he had a hidden cancer, but I was worried about how much strength he had lost. I’d try to see if I could work something into our conversation.

All of this flashed through my head in the moment between my question and Aaron’s answer. Anytime one of my patients becomes weaker or has substantial unplanned weight loss, I get worried and I start looking for other bits of evidence to corroborate my worries. This is one of the well-worn trails my brain goes down like water in a flash flood. I let the water sink into the ground at the end of the trail, largely reassured, and with my private action plan to maybe see if he’d be interested in physical therapy, and move on to Aaron’s dandruff.

Aaron gave me the names of two common over-the-counter dandruff shampoos: one with selenium as its main ingredient and another with ketoconazole, an antifungal, as its main ingredient. He had used each for a month, every other night, with minimal to no improvement. While he was talking, I examined his scalp. I had noticed a few flakes of dry skin on Aaron’s shoulders earlier, and now that I was looking closely at his scalp, I could see a lot of fine white scaling in there. Dandruff isn’t a hard diagnosis to make, and Aaron appeared to have made it correctly.

Aaron had arranged his hair in a bit of a combover in front, which I un-combover-ed. In doing so, I noticed that he had some yellow, greasy, heaped-up areas that looked a little bit inflamed.

“Have you noticed these kind of lumpy things up here?”

“Have I? That’s the main reason I comb my hair over. I wear a baseball cap most every place I go so no one can see ‘em, but I thought maybe the baseball cap was making ‘em worse so I tried going without it, but it seems like that made things worse, too! So now I don’t even know what to do! Sometimes I can scratch the lumps off, but more seem to come back to take the place of the one I scratched off!”

Aha! The dandruff is bothering Aaron, but the lumpy stuff adhering to his scalp is really bothering him. It is common for a patient to make a complaint that requires me to examine the area where the thing that is really bothering them is. Then I notice the truly bothersome thing and the patient doesn’t have to use any words about it.

“This and the dandruff are different forms of the same process. This stuff is called ‘seborrheic dermatitis.’ I can’t give you anything to get rid of it, but I have lots of stuff that should cut it way down.”

“Oh! That would be wonderful. It’s so embarrassing. I’m afraid people will think I’m not clean, so I cover it up by wearing my hat, but I’m afraid people will think I’m disrespectful for wearing my hat indoors, especially around ladies or when I’m in someone’s house. I have to choose!”

I smiled at Aaron. Although he was in his mid 70s, he had the manners of the prior generation of New England farmers whom I got to treat early in my career.

“I think we can make this better. Everyone’s skin makes this oily stuff called ‘sebum’ in their sebaceous glands which open onto the surface of the skin. People have more sebaceous glands in their eyebrows, nasolabial folds, and scalp. The sebum helps seal the skin against bacteria getting in and also to waterproof it.

“There is a yeast, just floating around in the air, that likes to feed on sebum. The yeast produces waste products that irritate the skin.

“You know how if you put a piece of bread out it gets moldy? The mold spores are just floating in the air and you can’t even see them. Same thing. Washing more will not help at all. The mold spores float in the air, land on your face or scalp, take a little nibble, and find your sebum-soaked skin delicious.

“It’s not really understood what happens here. Was the skin layer disrupted, and that allowed the yeast to get in in the first place? It seems some people’s immune systems are less able to fight off the yeast and some make sebum that is more delicious to the yeast, but there are lots of other reasons, most of which we only partly understand.”

“Well, it’s gotta be something because this has never happened to me before.”

“That makes sense, Aaron. You make a lot of sebum when you’re a newborn. In fact, what you’ve got here would be called cradle cap if you were a baby. And then you make a lot when you’re a teenager. Of course, everything goes wrong for teenagers’ skin. Then, as you get older, you again make more. This is probably a case of congratulations, you’ve lived long enough to develop this problem.”

“That’s one way to look at it,” Aaron said begrudgingly.

I say that line, I’d estimate, about twice a week. I don’t know if patients find it helpful or not, but the longer I practice, the more aware I become that not everyone is lucky enough to develop the problems of old age.

“The yeast digests some parts of the sebum and makes waste products. The waste products irritate the skin and change the way the immune system works in the area, and that can cause the redness and itchiness you’ve mentioned.

“It can set off a vicious cycle. Your immune system can’t get out of its own way. It’s funny. There’s been a lot of study of all of this. We have a huge list of chemicals in the immune system that get involved, but no one really has put it all together. It’s one of those cases where the more we learn, the more uncertain we are.

“The good news is that there are lots of places to intervene. You can try to dissolve the sebum and wash it away. You can try to kill the yeast, or to turn down the immune system. Each of these interventions has its own plusses and minusses.”

I look up at Aaron. “I’m sure you’re not surprised to learn that there is no free lunch.”

Aaron responds, “Everything comes with a price, doesn’t it? The older I get, the clearer that becomes. It’s like the hat. The price of not wearing the hat is that people might think I was dirty. The price of wearing it is that people would think I was disrespectful.”

I nod. “Your body makes sebum for a reason. The sebum lubricates and waterproofs the skin. It helps protect against bacterial infections, and it transports fat-soluble vitamins to the surface of your body. If you remove too much sebum, you end up with dry, flaky skin that is vulnerable to damage, such as from friction with your hat.

“If the skin is damaged by having the sebum removed, perhaps it’s more vulnerable to the yeast. We don’t know. The dermatitis doesn’t seem to be related exactly to how much sebum your skin produces, but rather to specific qualities of the sebum. Although you need to clean off some of the sebum, you can’t do it too aggressively or your skin will end up more irritated. We don’t really have a great intervention for that step.

“The next step, keeping the yeast at bay, is a better place to intervene. Antifungal shampoos and creams usually work well, and, if those fail, a week of an antifungal pill. The topical treatment is preferable to the pill because exposing your whole body to an antifungal pill that is only needed by a small portion of the body has potentially undesirable consequences. Also, seborrheic dermatitis is a condition we can manage but not cure. So, we don’t want to be giving you course after course of antifungal pills.

“The anti-fungal shampoos you bought over the counter help with dandruff by decreasing the amount of yeast living on your scalp and the skin of your face. One reason it might not have worked is that you might not have left it on long enough. This can be a bit of a Goldilocks problem. Leave it on too long, and it irritates your skin. Don’t leave it on long enough, and it doesn’t kill the yeast.”

“I noticed that! One time I took too long and my scalp got all tingly-like. My face was extra red that day.”

“If the over-the-counter antifungal shampoos aren’t strong enough, I can prescribe a stronger one. It sounds like they weren’t strong enough for you, so that’s where I think we’ll start. It almost always works, even for people with pretty severe seborrheic dermatitis. You will use it two or three times a week for the first two weeks or so, then go to once a week. Alternate it with an over-the-counter product that contains salicylic acid. That helps break up the crusty stuff.

“If those things don’t work, the next step is to use topical medications that interfere with the immune system. Because a lot of what is going on is that your immune system can’t get out of its own way, holding it back a little bit can be helpful. We’ll meet up in a month and see how you’re doing. Okay? That will also give us another chance to see how your blood pressure is doing, too.”

In my mind I add, “And it will give me a chance to see how your strength and weight are.”

“Let’s go up to Hannah and see if she can find you a spot then. Don’t be a flake and miss your appointment, Aaron.”

He looked hurt. “I would never miss an appointment with you, Doctor Mary.”

“It was a joke, Aaron, you know, flake? A person who forgets things? Skin flake? Sorry. I guess I better keep my day job and forget about that standup comedian career I’ve always wanted.”

Aaron smiled at me and said, “That’s what I’d prescribe.”

So, no career in comedy for me, and, according to my watch, no cup of tea this morning, either.

Next

*All patients are patient amalgams and any resemblance to a real person is accidental.

**Nothing in this esstory is or is intended to be medical advice. If you want medical advice, please see your primary care doctor.

“Then, I ran out of the pills. I tried to get more at the pharmacy, but they said they couldn’t refill the prescription. I called the clinic for the refill, and the nurse said I had to come in to see you. So I did. It’s kind of a scam to make people pay for appointments just to get their pills, but I guess I can come in once a year.”

It had been a bit over a year since I had last seen Lilly. Had Lilly stuck with the meds that controlled her high blood pressure, rather than abruptly discontinuing them after she got her skin cancer surgery, she would have been seeing me quarterly for maintenance visits**. 

Lilly’s blood pressure was a ticking time bomb. I had tried to convince her of that a year ago, but she was completely resistant to the message. For Lilly to have come back to see me, something bad must be happening to her.

I know I’m going to have a hard time not telling her “I told you so” and I know even more strongly that saying that will be the opposite of helpful.

“Hello, Lilly! It’s nice to see you! Your forehead looks great!” I leaned in to look at the surgery scar more closely. It was barely visible. “It sounds like you’ve been through a lot since I saw you last. What do you think caused this shortness of breath?”

“You probably think my blood pressure did it and are going to say ‘I told you so,’ but if you just give me the water pill, I will do fine. I don’t see how high blood pressure can cause this, anyway.”

“I’ll need to take a bit more of a look at you and do some labs to decide for sure what’s causing it. But you’re right. I do think the most likely cause is that your heart isn’t pumping as well as it should be because it’s had to make so much blood pressure for so long.

“But let me take a look at you before I say anything else.” 

Lilly climbed up on the exam table. She was noticeably slower at this than the last time I saw her. She was not moving effortlessly anymore and appeared to have to think about how to balance her weight as she climbed up on the step.

I continued, “I should add, though, in all likelihood, I’m going to need to order more tests. I won’t be able to treat you without more information, to figure out if it’s your heart or something else, but we can talk about that after I examine you.”

I looked at her chart. Her blood pressure was 154/91. Her pulse was at the upper end of normal. I could see that her ankles were quite swollen. 

“I’ll start at the top.” I took a closer look at her forehead. “Dr Dimitty does beautiful work.” 

I walked behind her and listened to her lungs. They sounded clear at the top, but at the bottom it was like velcro pulling apart. We call this “crackles.” It usually means there’s fluid in the lungs. 

I percussed her back to see if there was so much fluid that it was collecting.

Percussion is an old-fashioned physical exam technique we almost never use anymore because an X-ray answers the question more effectively and is a more permanent and reproducible method. To percuss, the doctor puts one hand flat on the person’s back and then taps the middle bone of the middle finger with the tip of the middle finger of the other hand. If there is air under the finger, the tap will sound resonant. If there is water, it will sound dull. If the dullness starts higher up on the back than it should, one can infer that there’s something in there that doesn’t belong, usually fluid.

The percussion test indicated that the bottom of Lilly’s lungs was about where I expected it to be, and that there was not so much fluid that it was pooling at the bottom.

I went around to the front and listened to her heart. Its sounds had changed from the last time I had examined her. A normal heart goes “lub dub.” Her heart sounded as though there was a horse galloping inside her chest: “duh duh duh dut.”I started to say “Oh, that’s not good,” but I checked myself. I managed to pivot to “Oh, that’s different from last time.”

I examined her swollen ankles. I could make a dent in her leg by pressing my thumb into the swelling. The swelling stopped just below her knee. It was the same on both sides.

I had her lie back at a half slant and looked at her neck veins. I could see the top of her jugular vein pulsating right below the angle of her jaw. She was fluid overloaded. The most likely cause was her heart not pumping well because the walls had been thickened from years of high blood pressure. 

I bit my tongue hard to prevent myself from saying “I told you so.” It wouldn’t be helpful. Strictly speaking, I had only barely told her so because she would not let me tell her anything! 

I knew what the road ahead looked like for her. It was not going to be pleasant. She could have been spared at least some of this misery. I don’t have the words for how frustrating it is to see something bad happen to a patient that I could have prevented if only they had allowed me. I felt terrible. What if I had pushed her harder to control her blood pressure? What if I had called her three months after she cancelled and encouraged her to come back in? 

Realistically, I don’t have time for that kind of outreach. Besides, I know it wouldn’t have worked. But knowing that I could have spared her this misery if only I could have found the right way to reach her is frustrating beyond words. This is especially hard for me because I pride myself on being a good communicator. I had failed to communicate to Lilly what was likely to happen if she didn’t control her blood pressure.

I took a deep breath and transferred my attention to feeling my breath go in and out. I imagined a wave of relaxation passing through my body and consciously relaxed what muscle tension I could. All of that would help me respond to the patient in front of me and not my own emotional state, which, at this moment, sucked.

“Well, Lilly - oh, you can sit back in the chair if you wish - I agree with your diagnosis. You do have too much fluid on board.”

“I knew it!”

“And you gave yourself a good start of a treatment for it, but in order to get you as good as we can, it’s going to take more than one pill.”

“Oh, I took more than one! When one helped, I took two, and when that helped, but I still was bad, I tried three. Four wasn’t any better than three, so I went back to three. Then I ran out of pills, and ballooned out worse than before.”

“Yikes, Lilly. Those pills can be dangerous if you take too many of them. They can dry you out more than your kidneys can stand, and they can deplete your body of potassium and other things it really needs. Besides, when I said ‘more than one pill,’ I really meant more than one kind of pill. You have a complicated condition. It’s one that requires close monitoring and a balancing of treatments.” 

“Yeah, you doctors always say stuff like that to make patients dependent on you. I did fine. I just need you to renew the prescription so I can get rid of this swelling.”

“Well, we can’t really say you did fine because we haven’t seen your labs, Lilly. Kidneys often don’t give much warning before they fail catastrophically.”

“You doctors are always making it sound like people are one step away from the grave if we don’t do what you say. You just want to make more money by doing more tests. I’m fine except for this swelling.”

This was not going well. I wanted to defend myself because I don’t make more money by doing more tests. I have no financial stake in the lab, and if I did, referring a patient to that lab would be against the law. Not only that, every test I order requires me to interpret the results during time I don’t get paid for. I only get paid for the time I’m seeing patients in the clinic. So, strictly speaking, every test costs me my own time - and time is money. 

I didn’t think explaining this would be helpful, so I kept it to myself. Again, I took a mindful breath in. 

“Lilly, if we’re going to work together, you need to take your pills the way I prescribe them. It’s not safe for you to take extra or to stop and start them or to take only some. There is a reason these medications require a prescription, and it’s not to make the doctors money. It’s to keep patients safe.”

I don’t know how common it is in other professions for the client to ask someone for help and then tell the professional that they think the professional is trying to cheat or manipulate them, but it happens often to doctors. It seems to me that in public, people say nasty things about businessmen and lawyers, but one-on-one with they treat them with respect. It’s the opposite for doctors. In public, we’re usually treated respectfully, but one-on-one, we have quite a few patients who treat us as quacks and charlatans. It’s one of the things I like least about being a doctor. 

Sometimes patients have to expend a lot of energy at the doctor’s office fighting their symptoms, leaving little left over for maintaining social niceties. Or perhaps in Lilly’s case, she is regretting her previous decision and is turning her anger outward rather than facing her own failures. All I know is that it’s unpleasant for me, and I need to make sure I do not allow her mean words to affect how I treat her. 

I think this sort of thing happens to me more than it does to the average doctor. I work at an FQHC. Part of our mission is to serve people that the rest of the health care system doesn’t have the patience for. I suspect that had Lilly gone to one of the for-profit health systems near us, her appointment would have been so short that no one would have known her wishes and desires, and, if they did, they would have told her to do what she was told or find a new doctor. Even at our FQHC, I have an unusual willingness to accept, or perhaps fascination with, people who have idiosyncratic ideas.

“Okay, fine, I just want rid of this swelling so I can get back to what I need to do!”

“I’ll do my best, Lilly. Last time, I was able to help you pretty well, but this problem is harder than the last one. You’ll have to do some tests, and you will have to come see me regularly.”

“I will if you can help me.”

“Okay. First, I need to know where we’re starting from, Lilly, and please stop taking the water pills I gave you before. I have other pills that will work better, for one thing.”

“I told you! I’m all out of them! I used them up a few days ago. When I tried to get the prescription refilled, they wouldn’t let me. So, here we are again.”

Lilly seemed to relish this little gotcha.

“Okay. I need a new set of labs so I know where we’re starting from. After I see them tomorrow, I’ll call you with advice. Also, I need an EKG. That’s where we stick glue pads on you and look at the electrical patterns of your heart. We can do that today in the office. And, I’m going to need you to schedule an echocardiogram at the hospital. That’s where they use an ultrasound machine, like they do on pregnant women, but they aim it on your heart instead. There’s no radiation in that test and it doesn’t hurt. 

“We’ll do the EKG now.” I hand her a gown. “Open in the front please. You only need to change from the waist up.” 

I leave the room and have my assistant, Chloe, come in to do the EKG. During the five minutes that the EKG takes, I answer the nurses’ urgent questions that have built up while I’ve been busy seeing patients. 

Chloe comes back to me with the EKG results and says, “I’ve never seen one like this before!”

I take a quick glance at it. I’ve seen a lot of EKGs that look like this, but she’s right. It’s not common for our patients. 

“That’s what years of untreated high blood pressure looks like on an EKG. See how the tracing in this lead overlaps the tracing on the other one? What makes up the amplitude of the wave is how much heart muscle you have. Lilly has built up a lot of heart muscle over a lot of years of having a lot of blood pressure. She’s like the Arnold Schwarzenegger of blood pressure.”

“That’s not a good thing, is it?”

“No, Chloe, Lilly’s heart will not be starring in any action movies. Her heart has bulked up so much that it can’t get out of its own way.”

As this thought came out of my mouth, I realized it was a good metaphor for Lilly’s whole approach to medical care. She can’t get out of her own way.

I returned to the exam room. Lilly was out of the gown and back into her street clothes. I showed her the EKG. 

“This means that, as we suspected, your heart is overly beefed up. It’s like a body builder, except that having all that muscle doesn’t make it stronger. Instead, your heart walls are thick and stiff, and the very bulk of the heart muscle prevents it from working effectively. A normal heart might be like a hand squeezing a balloon. Your heart is like a hand in a boxing glove squeezing a balloon. It’s not going to get as much blood out even though it’s working harder than the ungloved hand. Your heart knows the blood is not getting where it needs to go because the cells in the rest of your body make hormones that tell it that, so your heart tries harder. If we tell your heart to work less hard, it will actually do better. And, of course, the way we tell it to work less hard is with a pill. In your case, it’s going to have to be a bunch of pills. With that much going on, we’re going to have to adjust them a little bit this way and a little bit that way to get them balanced right. This is going to require you coming in often, talking with our nurses often, and taking the pills the way I tell you to. One of the pills tells your heart to ignore that hormone I just mentioned. Another will be a different water pill from the one you’ve been taking.

“If you want to get this over with faster, I suspect if we sent you to the emergency department, they’d admit you to the hospital and be able to do everything in a couple days.”

“No. I don’t want a bunch of strange doctors sticking who knows what into me. Besides, I can’t leave my dogs alone anyway.”

“I figured you wouldn’t want to go to the hospital, but it would be the quickest way to get you feeling better.”

I didn’t really have time for a digression, but Lilly was finally offering me something about herself - something about what her life was like and what was important to her. So, I asked, “I didn’t know you had dogs. What kind?” 

She pulled out an old smartphone with a cracked screen and quickly found a photo.

“Here’s Max. He’s so cute! And Minnie. She’s such a little lady - so delicate! And the other one is George. He’s a clown.” She showed me a picture of three identical-looking midsize short-haired tan dogs standing in a lawn. “They’re so active! It was really hard to get a picture with all three standing still. They’re brothers and sister. Their mother gave birth under my son’s porch, and she growled at anyone who came near them for weeks. He even put out food and water for her, but she still didn’t trust him for a whole month or maybe more. Anyways, after a long time, trying to get just a little closer and a little closer all the time, when the pups got old enough to come out, she let him get right up close and pet them and love on them and I just fell in love with all three of them and took them all home when they was big enough to go. My son kept the mom, he named her Daisy, and she died a couple years ago, just hauled herself under the porch and died. She was a good dog. Those are my babies.”

“They’re very cute.” “I like how their collars are all different shades of green.”

“Yep. That’s their spring wardrobe. Summer is yellows. Fall is reds. Winter is black, white, and blue. I love my babies.”

“I can see that. It makes sense you wouldn’t want to go to the hospital and leave them alone. Does your son live close enough that he could help?”

“No. No, he doesn’t.” 

Her tone had changed suddenly. She had been so happy talking about her dogs. It was a brief moment of camaraderie. Now she was clipped and almost angry sounding. What was up with her feelings about her son? I was not going to go there. 

“Well, that makes it harder.” I pause briefly and change the subject.

“Let me show you more about what your EKG says. This shows the electrical activity in your heart across ten seconds of time, in twelve different areas of your heart. This lump here is kind of like ‘lub’ and this lump here is kind of like ‘dub.’“ 

Lilly nodded. 

“The rhythm of your heart is nice and regular and all the beats are coming from the correct places so we’ve got that on our side.”

“You can tell that from all these squiggles?” Lilly asked.

I wondered: did I hear a tiny bit of admiration in her voice?

“Yes, and a lot more than that, too. See how big these are, how they lap over into the next row? That’s how the EKG shows us that your heart is too muscular.”

“You’d think having a muscular heart would be a good thing.”

“I know it seems like it, doesn’t it? But it’s not. That’s why, like I said, the first thing I’m going to do for you is to get your heart to relax a little bit.” 

“Ha ha! My family always said I didn’t know how to relax!”

“I’m not surprised to hear that, Lilly. 

“Just like last time, we’re going to start with a small dose and build it up. Please, please, please, follow my instructions and don’t try taking more or less, okay? These meds work really well, but you have to actually know how to use them to make it safe.”

“Okay, Doctor Mary. I’ll do what you say. I promise, but it’s so hard to get a hold of your nurses to ask questions.”

“I know. Can you use the email system? Do you have a portal account?”

“I don’t have email, if that’s what you mean.”

“Okay. I guess you’ll have to use the phone system. Anyway, I’m going to have you start with a little dose of a medicine that will lower your blood pressure a little bit and slow your heart down so it can relax a little bit between beats. It might make you feel a little bit tired, but I think it probably will make you feel better because your heart won’t be wasting so much energy working against itself. I want you to take half a tablet daily. Take the first dose right when you pick it up from the pharmacy today.”

“Okay. I’ll give it a try.”

“Let’s go see Hannah at the front desk to help you get your echocardiogram set up. That will happen in, like, a month or two probably. Next, you get new labs done. I’ll see you back tomorrow to see how you’re doing on this dose of medicine.”

I had learned a lot about Lilly today and, as happens after learning a lot, I now have more questions than I had had at the start of the visit. I was looking forward to seeing her tomorrow and what new mysteries might be revealed.

I want to hear more about Lilly!

*All characters are patient amalgams of patients who may not do exactly or even close to what I suggest and any resemblance to an actual person is accidental.

**Nothing in this article should be considered personal medical advice for any particular person to take or ignore. If you want personal medical advice, please see your doctor.

The next Lilly esstory.

“I feel fine now, but what if I’m harboring something horrible? I have to take care of my kids. I don’t have time for these problems, but I think I got the tick while watching my son’s soccer game. I can’t stop doing that kind of stuff! I can’t just stay inside until winter. Summer is the best season in New England. I don’t know what I should do.”

“Gosh, Alyssa! I’m glad you told me what you’re worried about. Let’s sort that out and then do your physical.”

“Okay. I’m pretty sure I need antibiotics, because I don’t want to have Lyme Disease, but now I think maybe I should have called you right away and not have waited this long.”

“Tick bites are a confusing topic, and Lyme Disease is nasty. But, there’s no reason to panic. Let me try to explain it all, but try hard not to gag because what I need to tell you about ticks is pretty disgusting, Okay?”

Alyssa had achieved a certain level of notoriety in the clinic because a few years ago, she had vomited while watching her husband get his earwax removed. Many medical professionals find earwax to be the most objectionable bodily fluid so my staff was quite sympathetic. 

“Okay, Doctor Mary. As you know, my stomach is not the best. Maybe I shouldn’t be having this conversation before lunch.”

“Well, we gotta do it now, Alyssa. Let me know if you need a barf bag. We always have one right in this drawer here.” 

I opened the cabinet drawer to remind her where they were. “As you know, we use them pretty often. One of my patients calls them elephant condoms because of their size and shape.”

Alyssa gasped and then giggled, “You never told me that before!”

“When I think about antibiotics for a tick bite, there are three different things we need to consider. 

• Do you have Lyme Disease?

• Are you in circumstances where we should give you an antibiotic to prevent you from getting Lyme disease?

• Is the tick bite itself infected just because ticks are disgusting and filthy? 

“I’ll go over these with you in reverse order, but first let me tell you about ticks because that’s important for understanding how they spread disease. 

“The life of a tick is pretty limited. They live at ground level around grassy plants and are active whenever the temperature is above freezing. They climb up the grasses and hang out at the top, waving their little ticky arms and hoping something comes by that they can latch onto, like your pant leg or your dog. 

“Once they’ve latched onto something warm, the ticks start climbing upward. When they can’t make further progress, they stop and begin gnawing through a spot in the skin. This is why you often find them at the hairline or underwear line. 

“The small ones are about the size of a pepper flake. The large ones are just a little bigger. Finding them is a tough job. 

“If you find one attached, do your best to pull it off. If you leave tick body parts in there, don’t worry about it. Your body will spit them out eventually. 

“The first thing to know about tick bites is that ticks do not brush their teeth. Even if they don’t give you a disease, they can give you bacteria that can cause an infection. 

“And, even if the tick doesn’t give you bacteria, their bite can get inflamed because your body recognizes the tick's biting and sucking apparatus as foreign and sends your immune system to do something about it. When the bite becomes inflamed, that’s your body working like it’s supposed to.”

Alyssa responded, “That’s probably what happened on my neck! You’re right, the bite was right at the hairline in the back, and I can’t see it! But I took a picture with my phone, and it looked all red and angry.”

“Yep. Let me take a look at your neck and at that picture.” 

I inspect both and conclude, “Your neck just looks inflamed, and I can see it’s better today than it was the day you took the picture. Let’s just have you keep an eye on it. It doesn’t look infected. I don’t think you need antibiotics right now. Of course, tell me if it gets worse. 

“Now, let me tell you about how tick bites work.

“In order for a tick to give you the bacteria that cause Lyme Disease, the tick has to be attached to you for about 36 hours. It takes them that long to really get going on feeding. It’s of course hard to know how long a tick has been on you because most of the time you’re not aware that you have a tick on you until well after they’ve started to bite.

“So, here’s what’s important to know about tick anatomy. Ticks have a little mouth part that pierces the skin and other parts that make a local anesthetic so you don’t feel the bite. The part that sucks up the blood has little barbs on it, and these barbs make a cement that does an impressively good job at keeping the tick attached to you. When the tick is done sucking blood, the barbs secrete something that dissolves the cement. The tick then drops off you and looks for a place to lay eggs.”

Alyssa asks, “So that’s why sometimes the ticks are easy to get off and other times it’s almost impossible? If they haven’t made their little cement yet, it’s easy to get them unattached.”

“Exactly. If the tick comes off easily, you don’t have to worry about it having given you a disease because it hasn’t been on you long enough. The tricky part is that they get themselves cemented in and start eating for quite a while before their bacteria start to get transferred to you. Ticks are really slow. So, if the tick is still flat and not swollen with blood, it’s probably not been on for 36 hours, but this can be hard to tell because they’re the size of pepper flakes. And while the barbs and cement are pretty icky, here’s where tick anatomy gets really disgusting. 

“The Lyme bacteria live in the tick’s intestines. When the tick is feeding, it sucks in your blood, then it extracts water from that blood and spits that water back into you. Along with that water comes the tick’s intestinal bacteria.” 

Alyssa says, “I bet that’s why people say not to squeeze the swollen tick when you pull it off, because you can squeeze its germs right into you, like making the tick throw up into the wound it made. Oh, this is so disgusting!” she giggled, “But it’s kind of fascinating, too.” 

I’m glad to hear that Alyssa probably won’t be needing the elephant condom.

“You can buy a special tick tool to remove them or use tweezers. 

“Another thing I should mention about tick anatomy is that I’m only talking about the kinds of ticks that we have in New Hampshire. Other places have kinds of ticks that can start eating blood much faster, giving you a disease much faster. The kind of tick we have to be concerned about around here is the blacklegged tick. It’s the one that carries Lyme Disease, and fortunately, it’s slow. 

“Wait! blacklegged tick? I thought it was the deer ticks.”

“Somebody in charge of naming ticks decided ‘deer tick’ was misleading. Maybe that’s so, but it does make for confusion. Now they’re called ‘blacklegged’ ticks. Anyway, that’s what you need to know about tick anatomy. The next topic is preventing Lyme Disease.

“Even if a tick has been on you long enough to transfer bacteria to you, if we promptly give you an antibiotic, we can prevent you from getting Lyme Disease. All that takes is a single dose of doxycycline. The percentage of ticks around here that carry Lyme Disease is very high, so this quick treatment with antibiotics is our best line of defense. 

“The problem is this works only during your initial exposure to Lyme Disease. It’s like how it’s easy to get rid of ticks before they’ve had a chance to cement themselves in place. Once Lyme Disease cements itself in place, it’s much harder to get rid of. So, if you find a tick on you that’s swollen or that you have reason to think has been on you for 36 hours, call me and I’ll give you a prescription for a preventative dose.”

Alyssa asks, “But what if it was a Friday night? We wouldn’t get the prescription until Monday. Wouldn’t that be too late? I’m really worried about this because between me and Ben and the kids, we’re always getting ticks. Normally, we’re able to get them off pretty fast because we’re pretty good at looking for them, but this one was sneaky, biting me behind my neck. Wouldn’t it be better for us to have the pills on hand, just in case?”

“Well, since Ben is my patient and I know his medical history and since I know both of you are reliable and thoughtful and wouldn’t just take the antibiotic randomly, I’m willing to prescribe a dose for you to have on hand if you or Ben were to need it. However, I am not your children’s doctor. Not only do I not know anything about their medical issues, I don’t even do children’s medicine. I know that some antibiotics we use routinely for adults are not safe for children. And even if doxycycline is safe for children, I wouldn’t know what dose to prescribe. It’s almost certainly different from the dose for adults. 

“So, I need for you to promise me that if I give you a dose to have on hand just in case, it’s only for you and Ben. No one else, and most particularly not your kids! If your kids get a tick bite, you have to call their doctor to find out what to do, or take them to urgent care.”

“Oh, gosh! I hadn’t thought of the fact that an antibiotic that would be okay for me would be unsafe for my kids. Of course, I promise that I would never give it to my kids - just Ben and me.

“But now you’ve made me worried about the bite I got. I pulled that tick off four days ago. That’s too late for the preventative dose, isn’t it? And the tick I pulled off was swollen, and when I smushed it, I thought I saw blood. It had to have been on me long enough to make me sick. I don’t know how long. Maybe I got it before that soccer game. It could have been there days earlier. I don’t know because I could not see it. 

“I’m just doomed now to be stuck with Lyme disease, aren’t I? I read on the internet just how awful it is and how hard it is to get rid of”. 

As Alyssa said this, her tone became ever more frantic. I couldn’t tell for sure if she was being overly dramatic to be funny or if she was serious. I decided it was safest to react as though I thought she was serious.

“No. The majority of ticks do not carry Lyme Disease. So, you are probably totally fine.” 

“Probably?” Alyssa asked, sounding alarmed. “Just probably? Like just probably last year when I probably only had a cold and it turned out to be Covid?”

“We figured out after testing you that it was Covid,” I reminded Alyssa. 

“So, suppose you were infected. Right now, you’re too far out to treat with a single dose of antibiotic, but not enough time has passed for your body to develop antibodies to Lyme Disease. So it’s too soon to test you for it. 

“What to do now is to get Ben to look at the back of your neck every day - or take a photo every day and do it yourself - and watch for a bullseye rash. It will probably be around the bite, but it could appear anywhere on you. If you see one, you have Lyme Disease and we’ll treat you. Even at this stage, Lyme Disease is easily treatable. 

“The bullseye rash, however, doesn’t always show up. If you’re still concerned, or you’re not feeling well, after two weeks have passed, we can check your blood for antibodies. If the antibodies show up, we can treat you then.”

“But why wait? Why can’t we just assume I have Lyme and treat me now? I don’t really like playing wait and see. It makes me all anxious.”

“Because the treatment for Lyme Disease is two weeks of antibiotics. The antibiotic is tough on your gastro-intestinal system. It causes most people to feel nauseated part of the time, and some people terribly so, and I bet you’d be one of them. Also, it makes a lot of people susceptible to sunburn with just minimal sun exposure. Worst of all, because of the side effects, some people decide not to complete the treatment.  Then whatever happens to them after that, it makes it difficult to interpret their blood tests and to diagnose any future symptoms that might or might not be Lyme Disease. 

“As I said, Lyme is treatable, but it’s really best not to undergo the treatment unless it’s really necessary.”

“I guess you’re right. My GI system is already a bit cranky. I could imagine myself getting annoyed with the nausea and stopping the antibiotic, then if my test came back positive, not really wanting to take the rest of the antibiotics. Also, I’m also prone to vaginal yeast. I bet I’d get that, too, as that happens almost every time I get put on an antibiotic. So, I get what you mean about not doing the treatment unless it’s really necessary. But what about all those people who have Lyme Disease and can’t get rid of it? They say if they’d been treated sooner, they wouldn’t be stuck with Lyme.”

“I would have to see the particular person’s situation, Alyssa. It might be, of course, or it might be other stuff going on that gets labeled Lyme Disease. Even if people get really sick, we can treat them successfully. Back when we were first learning about Lyme Disease, I saw two patients get really bad Lyme. Neither was my patient, but it was such a new and mysterious disease that all of the doctors wanted to hear everything about it. This was a really long time ago, back when doctors like me visited our patients in the hospital first thing in the morning before we went to our clinics. And all that travel back then took longer, as it was by horse and buggy.

“One patient got it in his heart’s conduction system. He ended up needing a temporary pacemaker because his heart was going at about thirty beats per minute. He got antibiotics and walked out of the hospital about a week and a half later. The other one thought he was having a stroke because part of his face was drooping. A neurologist heard the patient’s story and was the first to suspect Lyme Disease. The second patient took a bit longer to recover, but was discharged, totally recovered after about a month. They also had other, unrelated stuff going on that kept them in the hospital for some of that time.

“Okay, but on the internet I read about there being people who just don’t recover.”

“Some of the people who say that if only they’d been diagnosed sooner, their lives would be better, think that they have chronic Lyme Disease, but we don’t really know what they have. If you look around, you’ll find doctors who’ll give people antibiotics - in some cases IV antibiotics - for months to treat it. I don’t doubt that people who think they have chronic Lyme Disease feel bad and I don’t even doubt that they have something, but I am not convinced that the something they have is chronic Lyme Disease and I’m pretty sure that they don’t need IV antibiotics for months on end, but without seeing their charts, I can’t really say what they do have.

“When we check you for Lyme, we’ll also check you for a bunch of other diseases that ticks carry, just to make sure you don’t have those, too. Most tick-borne diseases give you dramatic symptoms, but usually not for a few days to weeks. They all have roughly the same kind of symptoms: fever, muscle aches, and GI symptoms. This makes it a bit of a challenge to tell if someone has a tick-borne disease or some virus. A virus will get better on its own, but most of the tick-borne illnesses do not get better without treatment, and they can make you really sick. So, if you get symptoms in the next month, I need to hear about it.”

“Yikes. Even though you’ve convinced me that Lyme is treatable, all of this stuff makes me feel anxious about ticks - especially the icky part about how they spit into you. I don’t want to take the risk of being bitten, but I don’t want to live inside all summer!” 

“There is stuff you can do to protect yourself. None of it is perfect, but it helps. Ticks live in grassy, humid areas, so keeping out of grassy areas, especially areas where the grass is tall, and especially in spots where the ground is damp. Unfortunately, in New Hampshire, that doesn’t exclude many places except the ones covered with pavement, water, or dense forest. 

“You can spray insect repellent on your shoes. I think this is especially helpful if you wear boots. Some people put duct tape around their pant legs with the sticky side out to catch ticks. Tucking your pants into your socks can help. Gaiters can help, too, especially if you spray them with insect repellent. Wearing light-colored clothes makes it easier to see the ticks, so you can remove them before they bite. Taking a shower after you’ve been in an area where you might pick up ticks is a good idea, and having someone else inspect you for ticks can be helpful, especially in those places that are hard for you to see, like behind your neck. 

“Now, that we’ve done tick university, shall we move on to your physical, Alyssa? I’ll start where I always do by asking you what you do for exercise.”

“I thought we just covered that. I walk around picking up ticks.”

*Alyssa and her family are patient amalgams and any resemblance to real people is accidental. None of the ticks, however, has ever been my patient; although I have become quite well acquainted with many over the years. These filthy blood-suckers are described accurately and appropriately disparagingly. 

**Nothing in this article is intended or should be taken as personal medical advice. If you want personal medical advice about ticks, please see your primary care physician.

Clare turns bright red and looks at the floor. She has a half-laughing, half-crying kind of expression on her face. Poor Clare is so embarrassed that she’s failed to identify what’s bothering her. All I have are clues that it involves water, exercise, and diet - and that’s about as generic and universal as you can get for health advice. Most things get better if you improve exercise, diet, and hydration. She hadn’t given any information in booking her appointment - which was supposed to be routine check on her anxiety meds - or in being roomed for her appointment. It’s pretty common for patients to want to address some issue other than the one their appointment is for, but they usually don’t leave me guessing what that issue is.

I sit silently for a moment, hoping that Clare will continue talking, but she just looks at me expectantly.

Something under the underwear seems likely. My best guesses are urinary incontinence or constipation. Usually, people with constipation will mention pain and people with urinary incontinence will mention the restrictions on their life or the expense of supplies. She hasn’t mentioned either.

To get her to say more, I go for a question that assumes nothing: “How long have you had this problem?”

“About two months. I kept trying what the internet said, and that didn’t work, but I knew I had this med check coming up.”

I try again: “Did the internet say anything besides to drink more water and exercise?”

“Not really. They talked about some over-the-counters and herbal stuff I could take, but I didn’t want to take anything because of my anxiety med. I thought it might conflict.”

There are probably herbals for urinary incontinence, but I am unaware of any over-the-counters. So, I’m going to go with constipation. To confirm that, I try a question that could be relevant to anything, but is specific to constipation: “About how often are you going?”

“Every few days.”

Aha! Now I know it’s constipation!

“I get cramps, and then sometimes a little bit will come out, or sometimes none at all. I keep getting my hopes up that I’ll feel okay, and I keep being disappointed. I used to be so regular. I didn’t have any problems, but now all of a sudden, I sure do.”

Thank heavens! I know the topic of conversation now. One of the communication problems here is that Clare is uncomfortable saying any of the necessary words. English has lots of words for poop, but they are all either childish, crude, or technical: the three contexts in which we talk about poop. I need to model the vocabulary for Clare. I usually use the word “poop” with patients, and sometimes “stool.” Most people can become comfortable with those. Hopefully, after hearing me say these a few times, Clare will become comfortable using the words.

“Any idea what changed to cause your constipation?”

“No, I keep wracking my brain. I didn’t change my diet. I’ve always eaten a high fiber diet, but I’ve even added in more and tried some over-the-counter fiber pills and it’s not helped any. I haven’t changed my meds. I haven’t added any vitamins or supplements except the ones I’ve tried to get stuff moving! Like I said, I increased my exercise and water. My periods stopped 3 or 4 years ago, and I’m still with the same guy and we have sex every once in a while and it doesn’t make any difference. I get really bloated sometimes, too. I look like I’m pregnant because sometimes I have so much gas!”

There’s some interesting information there, mostly just for ruling things out. Sometimes menopause can be associated with constipation. The underlying cause may be that. She’s still in the window where hormones would be okay. We won’t start there, but it’s something she could try.

Bloating can be an embarrassing and uncomfortable symptom on its own or with constipation. I’ll be giving her some basic GI information in a few minutes that may help with that, but first, I want to be sure there’s nothing concerning going on. Sometimes constipation can be a symptom of a serious underlying condition, although usually it’s not. I don’t want to miss something life-threatening, so we’ll start ruling those things out.

“Any blood in your stool?”

“No! I would have come right in for that!”

“Or mucous?”

“Nope.”

“Do you have to wake up to stool?”

“Nope.”

“Nausea or vomiting?”

“Yes, the nausea is the worst symptom!”

I glance at her chart. “You had your screening colonoscopy three years ago.” One possible but rare cause of constipation is colon cancer. If she were not up to date on her colon cancer screening, I would have taken this opportunity to encourage doing so.

“I’m not desperate enough that I want to do the prep yet. If this doesn’t get better soon, though, I might be begging for one!”

“I don’t think you need one at this point, Clare. I bet we can get you going again without a colon prep.”

I continue scanning, “Your weight is the same.”

“I feel like I’m heavier, even though I think I’m eating a little bit less, but that’s all probably just because my stomach is so bloated!”

“Yes, probably.”

I continue, “Any changes to your skin? Or hair?” If she says yes, she might have thyroid problems. In that case, I’d inquire about other symptoms such as being cold.

“Nope.”

“And nothing else going on? The rest of you is fine?”

“Yep. The rest of me is just like usual.”

“Okay, before we work more on your constipation, I need to cover the bases on the official reason you’re here, which is to check up on how you’re doing with your anxiety meds.” I go through a checklist with Clare. Fortunately, everything is going well and all I need to do is to issue more refills. Even with that good fortune, I’ll have trouble fitting Clare’s constipation issue into the time allotted for this appointment.

As I finish typing in Clare’s refills, I turn the topic back to constipation.

“Okay, let me poke around and see what’s going on with your constipation.”

I gesture to the table, and she hops up. I pull out the footrest, and Clare lies back and, without my asking, pulls her t-shirt up to her chest.

I put my stethoscope on her belly. A few quiet gurgles, nothing helpful, but also not alarming.

If someone is constipated, I can often feel their colon. I go looking for it. I start in the right lower quadrant and go in the path in which stool makes its way around the abdomen, looking for tenderness or masses. Her right lower quadrant is non-tender. Her right upper quadrant is non-tender. I have her take a deep breath and feel for her liver edge, which I do not feel. This can be normal. The important thing I find is that the area is non-tender, which is what I needed to know. I’m not interested in her liver or gallbladder today, so I do not linger. I move on to her left upper quadrant. Clare tells me it’s a bit tender there.

“Do you get cramps in this area?”

“Not usually. Usually it’s a little below there.” She pokes around a bit lower on her abdomen.

Patients frequently will interrupt my exam to do their own exam, as Clare is doing now. It’s rarely helpful, but it doesn’t usually take very long, so I let them finish. It is, after all, their body.

“Here!” she says triumphantly, “Here is where it’s usually sore and it’s more sore there today.”

“Okay. I’ll get there in a second.” I continue my exploration of her left upper quadrant. I am feeling for tenderness or masses.

“Ow!” Clare tells me.

I have found the trailing edge of her stool.

“Sorry.”

“No, you have to find the sore spots to figure out what’s going on.”

She’s not wrong. I inch my way slowly down to her left lower quadrant.

“This is all your colon, filled up with stool. I’m sure this is not a surprise to you, but this is why you’re not comfortable.”

Sometimes, when I say obvious things my patients will laugh - which Clare does. I continue towards the midline of her abdomen. There, her colon dives away from the surface and I cannot follow it.

I go to the right lower quadrant, which is not tender at all, and poke my index finger in as far as it goes comfortably, then suddenly pull it out.

“Did it hurt more going in or when I pulled it out?”

This is a quick test for irritation of the connective tissue in the abdomen. If it hurts when the abdomen is jarred, as when I pull my finger out quickly, there may be something seriously wrong, in which case I would send the patient to the emergency department to get some imaging. I am not expecting this to be the case, but the test is free, takes no more than 10 seconds, and to miss something serious would be unforgivable.

No problem with the in-and-out poke.

“I’d like to do a quick rectal exam.”

Clare wrinkles up her nose. I go into reassurance mode.

“I do these all the time. My fingers are not very thick. I’ll be gentle. It gives me a lot of information.”

I can’t tell if she’s just embarrassed at having me examine her there or if she’s afraid it will hurt. Of course, especially if someone has had violence done to them through their anus, a rectal exam may be traumatic and I won’t do it. There are medical contexts where this kind of exam might be necessary, but my office is not one of them. As Clare seems to have no serious objection to the exam itself, but, like many patients, feels guilty that I need to do the exam, I figure this is Clare’s issue. Rectal exams are just part of the job. I’ve done at least a thousand of them. They’re not a big deal to me, or most any other physician.

“There are two ways we can do it. I can step out while you put a gown on, or we can just slip your pants down around your ankles. Whichever you prefer.”

I learned in med school and residency to always make a patient gown up, but years of taking care of minimally mobile people have taught me that slipping one’s pants down works just fine. Once I started offering it to able-bodied patients, they all preferred it.

“I don’t have to change? I shake my head no.

As I predicted, Clare says, “Let’s just get it over with.”

“Okay. You stay lying there. Just pull your pants and underwear down to your ankles.

I get my gloves out of the box. I want to be sure she knows what’s coming.

“I’ll get some cold goo and then I will slide a finger inside your anus. Okay?”

“Ugh,” Clare responds, “I’m sorry you have to do this.”

There’s my answer for her hesitancy.

“It’s not a big deal. They’re just bodies. Everybody has one.”

She’s undone the waist of her pants and shimmied them past her hips and down to her ankles.

“Okay, just relax your knees apart like a frog.”

“You doing okay?” Just like with paps, I check in frequently.

“Yep,” Clare responds.

I learned in medical school to use a drape over the lower abdomen when doing a rectal exam, but it always gets in the way. Unless I am sensing a lot of discomfort from the woman, I skip the drape and go for getting it over with quickly and using a tiny bit less paper.

“Okay, you’ll feel me touching you, cold goo, lots of pressure,” and I slide a finger into Clare’s anus. I’ve already had a quick look at the outside, looking for hemorrhoids, fissures, masses, sores, etc. Internally, I want to know if there is stool in there, if so, what the stool is like, if the area is tender, if there is a mass. Often, I can stimulate the colon to start working by doing a gentle exam.

If there is anything unusual about the rectal tone, if the muscle seems to be squeezing me more tightly than usual or not as tightly, I will ask the patient to squeeze or relax and see what happens. Sometimes I ask the patient to push like she’s having a bowel movement to make sure that the wall of her vagina stays in place, but I don’t think that’s a super useful maneuver because very few women are willing to relax their anus while lying on their back on an exam table with a person between their legs. I rarely use it.

In Clare, I find some stool present, it’s formed and in small, hard pebbles. I stretch my fingers to feel all the way to her first rectal fold. I cannot feel circumferentially around the whole fold, but I can feel much of it.

“I feel that,” Clare tells me. “That feels weird.”

“Yep. It feels normal to me, but it’s your colon.” People frequently say it feels weird to be examined internally and I want her to know this is normal. The double meaning of “feels” gives me a way to say it all that seems clever, but is still clear.

I sllide my finger out and remove my right glove, then hand her the box of tissues. I look away while she cleans herself up. When she seems ready, I push the footrest in. If my patient is not as physically able as Clare is, I will slide their clothes up for them and help them sit up.

“You can sit in the chair if you wish.” She takes the opportunity to get off the exam table and onto a chair.

There are a lot of things I want to tell Clare about. My two biggest concerns are that she may be dehydrated and is eating the wrong type of fiber. Pebbly stools indicate dehydration, and bloating suggests issues with fiber. I also worry that my diagnosis is going to be “things don’t work as well as they used to; let’s fix what we can and see if there’s anything else going on,” and that is not a satisfying diagnosis, but we’ll get there and see how satisfying Clare finds it.

“Your GI system is basically just a long, muscular tube with some valves in it.”

This is not quite true, but as a first approximation, it is helpful. We’ve learned in recent years that our guts are not just a passive tube that carries food from one end of the body to the other. There is a complex interplay between sections of the tube and even betweeen the contents of the tube and the tube itself, to say nothing of the rest of the body. And so much is unknown or guessed at.

“In fact, you can think of your whole body, from the point of view of your GI system as just a pipe with arms and legs dangling off. One end is the mouth, and the other is the anus. The system is all twisty-turny like a three-dimensional version of the line for airport security, but it functions much like a river with everything flowing downstream. If you dam the river up at the end, things will overflow at the beginning.”

“Oh, I see! That’s why I feel kind of sick. It makes sense. If stuff is not moving forward, you can’t put more in.”

“Exactly.

“Each part of the tube has a different function and different things that can go wrong, but we’re going to think only about the last part of the tube, the colon, because that’s where I think things have gone wrong for you.

“The main functions of the colon are to serve as a reservoir for stool - a place to store it until we’re at a convenient place to have a bowel movement - and to remove fluid as the stool passes through. The colon has other functions as well. One, which we have learned a little about in recent years, is to serve as housing for the bacteria that produce compounds our bodies need. The bacteria digest what’s left of the food when it gets to the colon and make vitamins and other compounds that our body uses. These get absorbed from the colon along with the extra water in the stool.

“For whatever reason, Clare, your colon has slowed down very much and is removing too much water from your stool. There are some things you can do to keep more water in your stool, and these will help the stool move along and lessen your constipation. It’s not totally clear which is the chicken and which is the egg. Does having more water in your stools make them move more easily, or does having them move faster give the colon less time to absorb the water and make them move faster? Either way, more fluid in your stools is associated with the poop moving along, so that is part of why the standard advice is be sure to drink enough water.

“This is hard in your case because you’re already feeling overly full and drinking more water worsens that. Just do the best you can. Minimize coffee, tea - anything with caffeine - as they increase the amount of water that leaves via urine. Carbonated beverages may be worse for your nausea, or they may be better. You’ll need to experiment with that. Drink small amounts all the time. That should help get more water into your GI system.

“To try to keep the water in the stool, we’ll add some fiber. One of the ways in which fiber works to help you poop is by hanging on to fluid that is in the stool. Taking more fiber can be helpful for softening your stool, as long as you are drinking enough water. If you’re not drinking enough water to hydrate the fiber, it has the opposite effect and makes your stool even more like concrete.

“The other thing fiber does is feed the bacteria in your gut. Some combinations of bacteria and fiber cause the bacteria to make a lot of gas. When that happens, you end up with bloating. Some fibers tend to good for the bacteria that create gas. These are called soluble fibers. The other kind are insoluble fibers, and they result in less gas. You might want to avoid soluble fibers and increase your insoluble fiber so that you bloat less.

“On the other hand, if you don’t have enough soluble fiber, that can cause problems, because some of the beneficial bacteria need it. If the bacteria get unhappy, you can have problems. The gas may be an unfortunate side effect you have to put up with.”

“Which hand is it, then?”

“Everybody’s got their favored hand and there are lots of opinions out there about it. I am inclined to think that once you know the difference between soluble and insoluble fiber, you just have to try it out until you get a balance that keeps you comfortable. You can play with both the total amount of soluble and insoluble fiber and the ratio between them.”

“That’s so complicated!”

“It sure is! And we’re nowhere near done with the levers you have access to that can change your stool. Plenty of foods have soluble and insoluble fiber. I’ll let you look those up. ‘Psyllium husk’ is the generic name for a common soluble fiber, and ‘cellulose’ or ‘polycarbofil’ are the common generic names for insoluble fiber. You can buy both in a capsule form so you know exactly how much you’re getting.

“Prunes are a good source of both soluble and insoluble fiber. They can also help your bones. The problem with them compared to fiber pills is that it’s harder to be exactly sure of what you’re getting. Their effects vary from prune to prune. They do, however, taste pretty good compared to fiber pills.”

“Good to know. My mother always tried to get me to eat prunes, and so I’ve never had one.”

“Isn’t that interesting? I wonder if your mother had problems with constipation.”

“I’m certainly not going to ask her! You can see how uncomfortable the whole topic is for me. I bet you can guess where I learned that from.”

“The apple - a good source of soluble fiber, by the way - does not fall far from the tree.” I pause briefly. “And the apple tree, properly processed, might be a good source of insoluble fiber.”

Clare rolls her eyes. “So, I should get some fiber tablets, a couple different kinds, and chew on an apple tree?”

“Exactly! The other thing you should get is PEG 3350. Look it up. It’s the craziest thing. Initially, we thought it worked by bringing water into the stool and making the stool softer so it could move along better, but it actually seems to work by stimulating contractions of the muscle that makes up the colon wall. It does not affect the bacteria that live in your colon, and it is not irritating to the lining of your colon. It’s really a wonder substance for a lot of people with constipation.

“None of these substances, by the way, should affect your anxiety medication. So, don’t worry about that. You’ll need to experiment with them to figure out what works best for you. I would say that each change you make, you should try to keep at it for at least four days so that you really get an idea of how well it’s working because things don’t change quickly in your guts. For example, say you start with one serving of PEG and four days later, you feel like your stool is too watery, you could try decreasing the PEG or adding in an insoluble fiber tablet and see how that works and then make the next change. A lot of it really is just trying and seeing what works for your body.”

“I feel like a guinea pig!”

“I guess. Everyone has a different body and a different collection of bacteria in that body. There’s no way to know what your body is going to do with a particular substance until we try it.

“Shall we make an appointment in a month to see how things are going? To see if you’re going, Clare?”

Clare agrees. I tell her to stop at the front desk and make the appointment. I hope there’s a slot where I’m available. I check my watch. I’ve gone five minutes over on this appointment. My patients are backing up. I wish I could hydrate or fiber my way to improve that.

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*All patients are patient amalgams and any resemblance to a real person is accidental.

**Nothing in this esstory is or should be construed as medical advice.

If you have ever seen anything more cute and relaxing than Nettie, the snoring puppy, please let me know in the comments what it is.

“Let me take a closer look before I go telling you the wrong thing. I’m 99% sure they’re skin tags, but it’s always best to get a good exam first.”

I lean in. Jenny has about a dozen 2-3mm long, finger-like, flesh-colored, soft, tiny skin masses scattered on her neck. One of them looks irritated, as though her necklace might have pulled on it just recently. The skin on her neck appears slightly darker than the rest of her skin and velvety.

“Your research skills are good. Those are, in fact, skin tags. We can freeze them off. Medicare will pay to freeze these off because they catch on your necklace and get irritated. If it weren’t for that - if it was just cosmetic - Medicare wouldn’t pay. I’ll be sure to mention the bleeding in my note so that Medicare will cover it.”

I turn towards the computer for a moment and type “bleed and catch” to remind myself to expand the sentence later.

“I say “we” but I really mean my officemate. I don’t enjoy freezing things, and there are plenty of people here who do it well, so I let them do it. We can have you make an appointment to see him.”

I’m like this with any sort of procedure. Dealing with physical objects, using my hands to aim perfectly, at the right distance, for the right amount - those just aren’t my strengths. It’s good to know what you’re good at and to focus on it.

“Where did they come from?”

“We don’t really know what causes them. The leading theory is that they’re viral, but we don’t really know for sure. Interestingly, a lot of skin tags - not all of them, but 40 to 80% of them - contain HPV, the virus that causes cervical cancer. They don’t seem to contain the proteins that indicate the virus is replicating, so it’s not really known if the HPV virus just happens to be there, like an innocent bystander, or if it’s involved in causing the skin tag.

“People tend to get them on parts of their body that get a lot of friction, like armpits and neck. The thought is that friction might cause tiny surface abrasions that let the virus in, and then it starts the reaction that causes a skin tag. It’s not really known, though. Isn’t that interesting?”

“That’s one word for it. I think they’re just ugly.”

“That they are, but another thing we know about them is important for you to know. Skin tags seem to be a marker for insulin resistance.

“Insulin resistance is where your body requires more insulin to affect your blood sugar the same amount. It’s the underlying thing that is happening in your body to cause your sugars to go up. A person without insulin resistance might make 30 or 50 units of insulin a day and that takes care of everything their body needs. I’ve had patients with diabetes who take as much as 200 units a day of insulin. So, you can see that their bodies needed a lot more insulin to get the same results. They are obviously very insulin-resistant.

“Insulin resistance is what drives type 2 diabetes and makes it harder for your body to control your sugars. When you start developing insulin resistance, your body generates more insulin.

“Insulin is a growth factor; it tells parts of your body that are capable of growing to grow. Because you’re an adult, many parts of your body are not going to try to grow, no matter how much of any growth factor they’re exposed to, but your skin can still grow, of course. You need your skin to grow to heal wounds, for example. Your skin notes the higher levels of insulin and thinks it’s supposed to grow. When some skin cells get this growth signal, perhaps the spots on your skin that have the HPV virus already hanging around, they decide that they should grow skin tags.”

Jenny looks alarmed. “HPV is the virus that causes cervical cancer! Does diabetes increase the risk of cervical HPV growing into cancer?”

“It does seem to.”

“Wow! I didn’t know that! My pap smears have been okay, but my skin tags aren’t going to turn into cancer, are they?”

“No. The skin tags are ugly, as you’ve noted. They can catch on things, get irritated, and bleed, but they do not develop into cancer.

“There are around two hundred different types of HPV. Some cause regular old warts, some cause genital warts, some cause cancer, and some seem to do absolutely nothing bad as far as we can tell. Some are associated with skin tags.”

“What about the HPV vaccine? Would that keep me from getting more skin tags?”

“I don’t think the answer to that question is known, but one thing we do know is that the HPV vaccine seems to decrease the risk of regular warts and sometimes can be used as treatment for them - experimentally only! This is the case even though the strain of HPV that causes regular warts is not included in the vaccine. It must be that the HPV strains are similar enough for the vaccine to work on them. The vaccine also protects against cervical cancer, of course.”

“What about oral and esophageal cancers? I think Michael Douglas said that HPV causes those.”

“That’s a great question and complicated. For cancer of the base of the tongue and tonsils, yes. The tongue base is the part in the back of your throat that doesn’t move. For cancer of the rest of the mouth and esophageal cancer, the jury is still out, although most scientists think HPV is guilty. The label people use for these cancers is ‘HPV-related.’ We know HPV is not an innocent bystander, but we don’t have the whole story yet. In medical research, we have strict criteria about exactly what ‘causes’ something, and we don’t have research that’s that good yet. All we can say at this point is that there’s a probable cause. Stay tuned. I think we’ll decide in the future that HPV causes some esophageal and oral cancers, but it’s not been officially proven yet.

“And the jury hasn’t even been convened on the next question, which is, of course, would the HPV vaccine help prevent those cancers? Although, we have our suspicions.”

I pause for a moment to let Jenny absorb all the information I’ve given her. She thought we were going to be talking about skin tags, and we are, but skin tags are just the tip of an HPV iceberg.

Jenny starts running with the implications. “Does having these skin tags mean I’m going to get any kind of cancer?”

“Nope. The kinds of HPV that cause cervical cancer and oral cancer are different from the kinds that are found associated with skin tags.”

“Okay. I think I’m good with the HPV part, but explain the insulin part again.”

“Insulin acts like a growth factor. A growth factor is a protein our bodies make when we’re developing to help us grow or to repair ourselves after an injury or even after we’ve been working out, when we build muscle. Insulin’s main effect on adults is on blood sugar, but if you have high insulin levels when you are at a time in your life where you could grow, you do tend to grow.

“Or, if cells that maybe are poised to grow are exposed to a lot of insulin, they grow, like perhaps a skin cell that might be all ready to grow into a skin tag - maybe by getting exposed to HPV or some other thing we don’t know about yet - gets exposed to insulin and turns into a skin tag.

“People with insulin resistance have more skin tags. The other thing they often have is called ‘acanthosis nigricans.’ You have some of that on your neck, too. It’s the same kind of idea: insulin promotes growth of skin cells, and in some areas the skin gets thicker, softer, and darker. This usually happens where there are skin folds: neck, armpits, groin, under the breasts.”

“So these skin tags and that other skin thingy say I have insulin resistance?”

“Well, they do point in that direction.”

“What can I do about it? How do I get these things off of me?”

“As I said before, we can freeze them off. But the real thing to be worried about is your sugars. You can’t treat your skin tags hoping to make your sugars better.”

Jenny laughed, “Of course not! Who would do anything that silly?”

“You’d be surprised, Jenny! What have you been doing about your sugars? I see that you had an appointment with the diabetes educator.”

“I’m so frustrated! I’ve done everything the diabetes educator suggested. I play pickleball twice a week. I’ve completely changed how I eat, and I even go for a walk every night after dinner, but I just can’t get my sugars to go down - or lose any weight! It’s not fair!”

Jenny was in a couple months ago with a sugar in the pre-diabetes range. I encouraged her to exercise more, eat a lower-glycemic-index diet, and see the diabetes educator. It sounds like she has done what I asked her to and is not having the kind of success she would like. Sometimes when this happens it is because people have unrealistic expectations. Sometimes it’s because they may not be doing everything as thoroughly as they think. Sometimes it’s because life really is unfair. I can’t tell which is going on for Jenny without more information. Just like with the skin tags, the first step is a closer look.

“Let’s look at the numbers.” I open up her chart in the computer. “Last time you were here, you weighed 183 and today you weigh 181. That’s not nothing, Jenny.”

“It’s because I’m wearing lighter clothes now. My scale hasn’t budged.”

She’s not incorrect. Small changes in weight can be because of all kinds of variables; even a full bladder could add a pound. However, these numbers are what we have, so it’s what we go with. I’m wondering about how she is thinking about her weight and how tied up her weight is with her opinion of her worth. I can’t ask that question straight out, so I’ll ask other questions and see what turns up.

“What does your scale say?”

“The same. It’s always between 180 and 185.”

“Do you think it’s accurate?”

“I don’t know.”

She seems unexcited to talk more about this topic. I don’t find talking about weight to be very helpful in general, anyway. Sometimes it produces self-loathing and almost always, frustration. I prefer to talk about exercise and eating habits. Really, weight is a surrogate for those. We’ll poke around about her self-image and weight in the future if it comes up again.

“Do your clothes fit any different?”

“Maybe. My pants legs might be a little looser.”

“You know the thing about muscle and fat, right?”

Jenny looks puzzled.

“Sometimes, especially when you start exercising, you lose some fat and gain some muscle and your weight doesn’t change, but you’ve really helped yourself because the muscle is so much healthier for your body. It makes you stronger and less likely to fall and burns more sugar. Muscle is denser than fat, so a pound of muscle takes up less space than a pound of fat. That’s why you can weigh the same and yet your clothes are looser. That happens when people first start exercising sometimes.”

“Well, maybe. I have noticed that I can walk farther and play pickleball harder for longer now than even just a month ago.”

“There you go! You can see how the muscle is benefiting you. Also, it sounds like you’ve improved your cardiovascular fitness, too.”

“I guess I have. It’s fun to replay people I played when I first started because they all notice how much better I’ve gotten. I can usually get a point out of them before they even realize what’s hit them,” she laughs. “Some of that is just learning the rules and how to hit the ball, though.”

“That makes sense, but some of it is that your muscles are getting stronger and you’re getting more confident in using them.”

I am happy the conversation has turned towards what her body can do rather than how much it weighs. Focusing on function is much more helpful.

As long as a person doesn’t get injured, exercise always improves how a person feels about their body. It is one of the few absolutes in medicine, and I would rather have her focus her energy on getting more exercise and noticing the positive aspects.

“I think you’ll continue to get benefits just from starting up for a while and keep being able to surprise your opponents - and yourself, too, hunh?” Jenny laughs.

There’s not a whole lot more to say on this so we’ll move on to the next topic.

“So, what have you noticed about your sugars?”

“They haven’t changed at all.”

Jenny pulls out her phone to show me the data. I wonder if this is going to be another case of her expecting huge changes when she’s in fact making subtle progress.

“I see you popped for the continuous glucose monitor.”

“I did. It was $80 for two and I saved the other one to use in a couple months to see if things are really better.”

She opens up the app on her phone and shows me two weeks’ worth of sugars. Again, I see that Jenny is being too negative.

“I disagree, Jenny. There is some improvement here. It’s subtle, but again it’s not nothing, and it’s only two weeks’ worth of data. At the beginning, you had more times when the number went close to 200. At the end of your two weeks, you were trending downwards. If I had to draw a line summarizing the data, it would be sloping downward. Remember, you only had this monitor for two weeks, and your sugars have been creeping upwards for a lot longer than that. It’s not like eating with a lower glycemic index for two weeks is going to fix everything.”

Jenny makes a pursed lip face. “But I want it to! I mean, I’m doing my part. Why won’t my body behave?”

“You mean why won’t years’ worth of damage be reversed in two weeks? I don’t know, Jenny. It would be great if it worked that way, but it doesn’t. You’re making progress. Your clothes are telling you. The monitor is telling you. Your pickleball opponents are telling you. I’m telling you. Have some patience, Grasshopper.”

“Okay. Fine. I guess you’re right. I had another question, though.”

“I want to hear it, but there’s one more thing I want to point out. Your blood pressure is five points lower than last time.”

“Okay. Fine. I’m convinced! It’s weird, though, how there seem to be more skin tags now that I’m doing something about my sugar.”

“It is a little weird, but probably there’s a lead time. The skin tags that just popped up have probably been developing for some amount of time. Do you really have more skin tags now?”

“I do. I used to have a little, and now I have a lot.”

“But you’re still, you’re still Jenny from the block!” I finish for her with a laugh.

“And maybe you should come back in two months so I can hear about your pickleball victories and we can look at the longer trends on your sugars. I’ll ask Hannah to set you up with Doctor Tom to freeze those tags off when your schedules match up.”

“That sounds good, but you’re not sending me off with a better tagline than that?”

“Don’t freeze when you see Hannah. She’ll find a time when you can tag up with Doctor Tom so you can make your skin tags stop tagging along with you. If she’s not there, you’ll have to play phone tag.”

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*Please note that all the characters in this esstory are patient amalgams. I have had plenty of patients with skin tags over the years.

**Please note that this esstory is not, and should not be construed to be, medical advice. If you want that, go see your primary care provider and find out if they make worse puns than me.

“Nonexistant. Why?”

“Too bad. It would help with your next patient, Jaques*. He’s 75, from Quebec, here for the winter. Sweet story. He and his wife have been together since they were thirteen. They spend summers near their hometown of Saguenay, on a lake near the fjord. It’s really pretty there. Have you been there?”

I shake my head no.

“You should go. In your spare time. The rest of the time they are here because their children and grandchildren are here. He started telling me all about it when I spoke French to him.”

“I didn’t know you spoke French, Chloe. You have hidden depths.”

“I do, Doctor Mary, that I do. My grandparents are from Quebec. They spoke French at home. My mom didn’t speak French to me, but I spent a lot of time with my grandparents when I was little so I picked it up from them. I can still speak little-kid French. My vocabulary isn’t very good, but I can do the basics okay. I understand most everything, but it’s hard to say stuff.”

“So, is Jacques here so that you can show off your French skills?”

Chloe starts giggling. “He’s here because he needs a local doctor, but he also is here for angine de poitrine.”

I was puzzled. “Those guys with the weird costumes who play microtonal music?”

Chloe continues giggling. “I guess you’ll find out. Call me if you need help. I will be adding a hidden depths section to my resume.”

I go to the exam room and introduce myself to Jaques and his wife.

“Je ne parlais pas de Francais,” I say in what must be the most Yankee accent imaginable.

“Ça me semble être du français,” Jacques says pleasantly.

“Ha ha,” I answer, “That’s all the French I have.”

I wondered what he had said**. Jaques switches to English. His command of English is pretty good, and he has a beautiful Quebecois accent.

“Oh! I think you are going to be like your wonderful assistant. She speaks very good French. My wife will bring her maple donuts next time I come in. Do you like maple donuts?”

He doesn’t wait for me to answer. “I will bring some for you, too. They are so delicious, these ones. “ And my wife?” He smiles proudly at her. “She is the best cook in New Hampshire.” Just look at me.” He pats his stomach with a satisfied look on his face.

I smile, “That’s very kind, but you don’t have to do that.”

Secretly, I am hoping they do. I love maple and donuts - and together, I bet I love them twice as much.

“What can I do for you today?”

“I need a doctor. I always see my doctor in Quebec when I am there in the summer. French, it is still so much easier for me than English, and I don’t have to pay. That is nice, eh? But I have a problem now.”

I glance at the computer. He has a commercial company listed as his insurance. Canadian health insurance does not pay for much in the US. At our clinic, we’d see him regardless of whether he had insurance or not, of course, but without insurance, everything more complicated than ear wax removal becomes very expensive, very quickly. It’s a relief for me that I won’t be worrying about running him up a huge bill.

“I am fine, but my wife and my daughter, they worry. They said I had to come in.”

Jaques has his arms crossed over his chest now and is leaning back in his chair. He was definitely happier talking about donuts than himself.

“Why do they say that?”

He breathes in and out as though this has been a long-standing resentment.

“Last Tuesday, when I watch TV, I had a feeling right here.” He places his fist in the middle of his chest.

I learned in residency that if the patient uses a fist-like gesture to describe their chest pain, it increases the chances that what the patient is describing is a heart attack. I’ve seen patients do this several times, and I think there are even some articles in very old medical journals about this.

His wife speaks for the first time, “Tell her the truth, Jacques!” and then a torrent of French words. I was able to pick out the mysterious word angine several times and poitrine as well. As Chloe had already clued me in on, angine de poitrine is why Jaques is here. But what does it mean?

Jacques spoke back in French and then turned to me.

“I am sorry. When you are used to speaking in one language to someone, it is very difficult to speak in another language, at least we find it so. Angeline wants me to be sure to tell you it was very bad, the pain that I felt here. It was, but I did not think it was a pain. I thought it was an ache.”

I’ve learned to pay a lot of attention to my patients’ word choices when describing pain, as they tend to use certain words for certain kinds of pain. For example, if the pain is caused by nerve damage, people often describe it as “burning,” whereas for cardiac pain, they will often describe it as a kind of “pressure.” Inflammation or infection is often an “ache.”

Of course, these distinctions depend on having strong verbal abilities. A lot of my patients don’t have such abilities. With them, it’s always harder to diagnose their pain. Their word choices are not only less specific, they can be a bit idiosyncratic. Now I’m dealing with a patient whom I’m not only unfamiliar with, he thinks in French. Will my word choice experience, learned with English-speaking patients, transfer to a French speaker? I need to take extra care here to be clear on what he’s describing.

“I hear Angeline describing it as angine. What does that mean?”

“Angine: it is a kind of squeezing, heavy ache in the chest. It didn’t last long, but I notice it, yes.” He made the fist-to-mid-chest gesture again. “Then, it was like this,” he relaxed his hand.

Well, that certainly got my attention. It sounds like angine might be French for “angina,” the pain, or ache in Jacques’ case, associated with a heart attack or an impending heart attack.

“And what does poitrine mean?”

“Poitrine just means chest, like here,” again with the fist gesture, “Angine de poitrine: a chest feeling that kind of squeezes.”

Now, I am all ears. This sounds serious.

“And it hasn’t come back? You don’t have it now?”

“No, it did not return. Not even a little bit. It’s not here at all.”

“Okay. First off, if it happens again, even if it goes right away, call 911.”

Angeline breathes in sharply and says, “You see? We told you to go to the hospital.”

Jacques sighs. “Oui, ma belle.”

“It could be something very serious, like a heart attack that maybe kind of changes its mind after starting, and if it comes back and doesn’t change its mind, I’d like you to be at the hospital or at least on the ambulance already.”

“Oui, madame,” he sighs again.

“What were you doing when the angine started?”

“We’ll get you speaking French in no time, Doctor Mary. Je traînas.

“Nothing! I sit on the couch. I watch the TV. It was a Canadian show, my favorite, Schitt’s Creek. Maybe you know it? I had been laughing, then I felt it here,” he made a fist-like motion again. “I drink a glass of water. That didn’t help. So, I go to the bathroom for my calcium tablets, but it went away before I got there, so I came back and finish the show.”

“He got white, like a ghost,” his wife adds. “He looked bad. I was scared.”

The fact that he has used the word “squeezing” in English and Angeline has used a French word that I’m now pretty sure means “angina,” and he has used the fist gesture, all have me on high alert that the pain Jaques experienced is something to be worried about.

I try to collect more information from Jaques and Angeline, but there’s nothing more to the story. The pain hasn’t happened before or since. When he felt the pain, he also felt a little bit dizzy for a moment, but he had no headaches or palpitations. If he had had palpitations, I would have figured he had a rhythm disturbance, either potentially as the thing that caused the chest pain, or as a result of a potential blockage in the blood supply to part of his heart.

He hadn’t eaten or drunk anything unusual or taken any herbals, supplements, or vitamins that he didn’t usually take or skipped anything that he usually did. He had one medicine for blood pressure. It was a medium dose, and he had taken it faithfully for years. He had not checked his blood pressure when the pain happened. I wish he’d checked it at the time. It wouldn’t really rule anything in or out, but it would have been a piece of information. Also, his monitor probably would have told us his heart rate and maybe even rhythm.

His family history was interesting. His mother had died in childbirth. His father had died in a car accident, alone, when he was in his mid 40’s. The police told Jacques that he probably fell asleep while he was driving, but Jacques has always wondered if he had had a heart attack. “They didn’t do anything to find out in those days. He was not overworking. It was morning and he had never fallen asleep before while driving. We will never know.”

Jacques has not given me much to go on, which is not uncommon, even after I ask him all the questions I can think of. I do a physical exam and have Chole do an EKG. The exam turns up nothing. His EKG is normal. That’s nice, but as he is feeling well now, his normal EKG doesn’t tell us much about what happened ten days ago, except that whatever happened didn’t produce any damage that showed up on an EKG. Whatever had happened that evening was not a large heart attack.

I order labs to rule out the things that this might be, especially the ones that could kill him. If the event had been more recent, I might have ordered a troponin test because when a heart cell is damaged, troponin ends up in the blood. But as the event was ten days ago, the troponin would have cleared by now. There are many tests that are positive during and shortly after the event and if one gets to the Emergency Department shortly after the event, things can be ruled in or out. Ten days later, not so much.

One of the labs I order is for his cholesterol. I’d normally like to get that measure while he’s fasting, as that gives me a fuller picture, and he’s not fasting now. Fasting labs would require Jaques to come back to the clinic. Since I have him here right now, I’ll have him do the labs now and use those numbers. I suspect I’ll need to put him on a statin. Angeline may be a bit too good of a cook for Jaques’ own good.

The standard recommendation if one thinks there is a good chance that a person has coronary artery disease (which I now think is the case with Jaques) is to start a statin right away, regardless of the cholesterol numbers. A day or two’s delay will not matter, as statins’ benefit is accrued as length of time with an exposure to a lower level of cholesterol. Many patients push back against statins. I would rather not risk Jacques deciding I was a pill pusher. Knowing that I had looked at his numbers would decrease this risk.

Another standard recommendation if one thinks there is a good chance that the patient has coronary artery disease is a daily aspirin. An aspirin takes effect immediately and if he has undiagnosed heart disease, taking a daily aspirin will help prevent a heart attack. The potential downside of an aspirin is primarily bleeding in the stomach. I hope he doesn’t have this, but if he does, the risk/benefit profile still favors preventing cardiac events. I recommend a daily aspirin and Jacques agrees. He might have agreed to a statin, but I’ve already committed to waiting.

I give him a bottle of nitroglycerin tablets. They will cause temporary vasodilation and will often relieve cardiac chest pain. I tell my patients to take them one at a time, up to three total, five minutes apart, while they wait for the ambulance.

I order a stress test. It will take a few weeks to get those results. Even if I call and beg, I can’t get anyone scheduled in less than two weeks. I know because I called and begged for someone else last week.

I ask Jaques to schedule another appointment with me in a month. If he does well on his stress test, the visit will be to continue sorting out the pain, check his blood pressure, and do a physical exam. If he does not do well on the stress test, we will discuss his new diagnosis, and I will answer the questions he and Angeline undoubtedly will have.

I remind him to go to the ED if it happens again.

I suspect that Angeline will bring us maple donuts. I already know how to say thank you in French, but I will have to work on how to say “These are very delicious. Please pass that plate back over here.”

Meanwhile, I’ll never think about these two guys the same way again.

*All of the patients in this esstory are patient amalgams. Any resemblance to real people is purely accidental.

**Nothing in this esstory is, or should be construed as, medical advice. If you want that, speak to your doctor in whatever language works best for you.

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Chad had been discharged from a teaching hospital in Boston after a six-week-long admission for a rare condition that I’d never heard of, which took specialists within specialties three weeks to diagnose, and which required Chad to undergo two surgeries. Ultimately, the specialists were successful; Chad could look forward to a full recovery.

The onset of his condition was abrupt. I never saw him about it. He went straight from healthy to the Emergency Room, to admission, and then was transferred to a teaching hospital. Prior to this, Chad had no medical history. In fact, I had seen him exactly twice before. Once, when his daughter had given him strep, and once for a referral for a vasectomy. He was 44, had a job, a wife, a preteen daughter, and a body that had grown accustomed to large doses of opioids during the course of treating his painful medical condition.

He had been discharged on Wednesday with four days of OxyContin and detailed instructions for a projected month-long taper of his pain meds. His specialists had not bothered to call me about that plan. I learned about it - and my part in it - during his appointment with me, on the third day after his discharge, which happened to be a Friday. He had one day of medications left.

Chad told me the story of what happened and showed me his incision, which was healing nicely. He said he had a follow-up appointment in a specialty clinic in Boston, and made plans to see me in a week, as I was to manage his taper.

I sent in the prescription for Chad’s OxyContin and documented the condition of his incision, that we had talked about his follow-up appointments, the visiting nurse, his opioid taper, and his eventual return to work. I thought things were all set.

Then came the call at dinner time, and “I’m not comfortable prescribing because of the size of the dose involved.”

This seemed a bit odd to me, as being on call means you handle incoming calls; you don’t pass the buck to your colleagues during their time off. It seemed to me to be an uncontroversial prescription: it was a hospital discharge plan, and the patient had already been on these meds at the hospital and for three days post-discharge without difficulty. But, as I already knew, a lot of my colleagues simply won’t prescribe opioids.

I decided not to argue. It was easier for me to just deal with the situation myself than to push back. Perhaps my clinic’s rules for call had changed in the decade since I last had to do it. It’s not like the on-call doctor had interrupted me doing something special anyway.

I opened my computer and sent the prescription to Big Box. It took less than five minutes for me to do, although the time cost was higher than that because I had to grumble to my husband while he held dinner for me. “She’s supposed to be able to handle whatever comes up while she’s on call! I specifically don’t do call even though it pays pretty well because I can’t cover the children and I might get calls that I couldn’t handle. If she can’t take all the calls, maybe she shouldn’t be on call. This is not a crazy, obscure prescription.”

The next morning, as I was responding to comments on my latest Doctoring Unpacked article, the same on-call doctor texted me again. “Big Box is out of stock, and the patient has been calling our answering service. He says he’s called around and no one will tell him if they have it in stock or not, so he wants you to call around, find it, and then call it in for him. If you want to do that, you can, of course, or do you want me to tell him to go to the Emergency Department?”

As my old officemate used to say, no good deed goes unpunished. I should have pushed back last night and made the on-call physician handle it. I considered doing that now, but my impression was that the on-call would simply tell Chad to go to the Emergency Department and wash her hands of the matter. I didn’t want to make Chad do that. He’d have to pay an expensive deductible, waste his time, and get exposed to all the sicknesses that are there while he’s recovering from a six-week hospitalization, to say nothing of the extra, unnecessary work it would make for our local Emergency Department, which was always stretched too thin.

I texted back, “Usually pharmacies are willing to tell callers if they have a med in stock or not. That seems weird.”

The on-call texted, “That’s what I thought. I’ll tell the answering service to tell him to call around or go to the Emergency Department. They say he’s been kind of rude anyway.”

Chad had no history with us of being rude. He’s just been through a huge medical ordeal, he’s in pain, and he’s possibly starting to experience withdrawal due to the taper. He may well be catastrophizing that people are going to tell him he’s drug seeking and treat him like an addict if he goes to the Emergency Department. The on call provider may be treating him that way already. His job as a heavy equipment operator at a quarry does not require him to be well-spoken. He probably doesn’t know how to express his frustration and pain besides being cranky. Maybe even downright rude. I don’t want him to go to the Emergency Department, possibly be treated badly, and then get another phone call from him in eight hours in the same position we’re in now, except Chad is in more pain and even more frustrated.

“Hang on,” I text back. I take my best guess at which local pharmacy will have the medication and call them. Their phone tree thinks I’m a patient despite my hitting 1 for provider, and is upset because the date of birth associated with my phone number is not the same as my patient’s date of birth. I hang up in frustration.

I remember that I have another patient on OxyContin who has not had problems getting it filled. I open her chart. She uses a pharmacy over an hour away from where Chad lives. (Yes, this patient travels an hour to see me.) Fortunately, that pharmacy is part of a chain that has a closer store. I call them. They put me on hold for seven minutes. When they finally get around to answering, I’m told, “Oh, we haven’t had OxyContin in three years.”

I am pretty sure this is not true, but I don’t see any point in arguing with her, so I say “thank you” and hang up.

I call back the first place again. This time pressing 1 works for me. I wait on hold a few minutes. The pharmacist tells me that long-acting OxyContin is, in fact, in perpetual shortage, but she has twelve pills of the correct dosage in stock. I thank her and give her Chad’s name since he’s not a regular customer.

“I’m curious. If a patient calls and asks for this info, do you give it to them?”

“I do, but not all pharmacists do. Some just lie and say that they’re not allowed to give the info out. Some will say yes or no, but not give the count. Some of them feel like giving the info makes a robbery more likely, but the real problem is that you have to use a special computer to look it up and not everyone is willing to sign out of the usual terminal, walk across the pharmacy, and sign in to the special monitor.”

Given what I’ve heard about how Chad is handling this, I figure his crankiness has made matters worse for him. I thank the pharmacist and submit the prescription. I then text the on-call and tell her which pharmacy I’ve sent the prescription to and ask her to notify the patient.

She says she will and then texts me back that she herself is at the Emergency Department of a different hospital with her elderly father-in-law, who has been in a hall bed for twenty-four hours, waiting to be admitted. That explains a lot, I think. Everyone is nervous about prescribing opioids because there are lawsuits and deaths associated with them, and in a situation where a large part of her brain was occupied by her sick father-in-law, the on-call defaulted to the easiest answer, which was just texting me.

Whatever. The problem is now solved. I can enjoy my quiet time over the weekend, catching up on last week’s paperwork and writing next week’s Doctoring Unpacked story.

Over the weekend, Chad leaves a phone message at the clinic, “My insurance wouldn’t pay for that particular pain med. I was in pain so I just paid cash for it. It costs about $50 a day, which I could afford for the weekend, but can’t really afford. I run out of meds on Monday. Can you do the prior authorization? Whatever that means?”

For patients unaccustomed to dealing with the Byzantine world of insurance for prescriptions, how things get handled is often inscrutable.

Just before Chad left the hospital, the specialist sent in prescriptions to Chad’s local pharmacy for him to pick up. It was likely several medications, one of which was high-dose OxyContin for four days. For everything else he probably got enough to go through to the end of his post-discharge treatment, but not the pain meds, as the hospital handed the task of tapering him off to me. When Chad was in the hospital, his medications were under his inpatient benefit, which has completely different rules than his outpatient benefit.

Chad was then discharged. An hour or so later, the specialist received a fax from Chad’s pharmacy saying that the insurance company would not cover the OxyContin now that Chad was no longer hospitalized.

Chad had been discharged. Chad was no longer the specialist’s patient. Chad was screwed.

When his wife picked up the prescriptions, the total bill seemed reasonable. The $200 for four days of OxyContin got buried into the rest of the bill. The person handing over the bag at the pharmacy likely said nothing about what insurance had not covered.

Now it was Monday morning. Chad had spent another $200 and was almost out of pain meds again. He couldn’t afford what the hospital had not only prescribed for him, but got him (temporarily) physically dependent upon. My clinic’s office staff refer his message to Sage, whose entire job is about jumping through the hoops insurance companies have us jump through before they will pay for medications. Often these hoops mean getting the doctor to change the prescription to a cheaper medication that the insurance is willing to cover. Sage suggests that usually the insurance companies are willing to pay for morphine and texts me about whether that could be used instead of OxyContin.

It can be, but it’s not straightforward. In theory it’s a simple matter of X milligrams of morphine can be substituted for Y milligrams of OxyContin, but patients can respond differently to the two meds - and these are dangerous meds.

I receive Sage’s text in my zero-minute gap between my 9:20 and 9:40 am appointments. I double-check the conversion factors, do the calculations, send the prescription in, and cross my fingers. The seven minutes I spend on this will reverberate through the rest of my day.

An hour later, Chad calls back. His pharmacy is out of stock for morphine. Fortunately, this is now happening during business hours. My team is there to help me. Sharique calls around and finds a pharmacy that has morphine in stock. Had the prescription been for something other than an opioid, she could have transfered the prescription herself, but because it’s an opioid, I have to do it. Not only that, there’s a special system that I haven’t mentioned before that makes sure that it’s me doing it. The system involves a fob that I have to carry around. The fob generates a special code that is continually changing, and which is needed to submit an opioid prescription.

Sharique sends me the request to move the medication, tagged high priority. In the zero-minute space between patients, I check for urgent messages. I take a minute to deal with this one. I transfer the prescription. My 10:20 ran ten minutes over. It’s now 10:59 and I’m off to see my 10:40 patient.

The pharmacy calls the clinic. They say they need a prior authorization. Sage calls the insurance company. It turns out that the kind of morphine I had prescribed was not the kind of morphine the insurance would pay for, and it turns out that the reason they didn’t inform us of this was a glitch in their faxing software and that they were aware of that glitch. They “sincerely apologize for any inconvenience that may have been inadvertently caused by this unavoidable mistake.” The representative reads the list of approved forms and dosages of morphine to Sage. Sage types it up and puts it in a high-priority message to me, which I look at at the beginning of my lunch hour, which has started 23 minutes late. I send the revised prescription to Chad’s preferred pharmacy and then take my leftovers to the microwave to heat them up. My next patient will be expecting to be seen in about 35 minutes.

Shockingly, nothing goes wrong. The pharmacy has the med in stock. The insurance company approved it. Chad’s next dose is due at dinner time, and he’s able to pick up his prescription in mid-afternoon.

I had Sharique call Chad and give him advice about switching from OxyContin to morphine, warning him that his body might not respond to the change in the average way, that the dose might turn out to be too little or too much, and that we needed a report back from him in the morning about how he was feeling. He also needed to pay attention to his bowels because opioids cause constipation, and his reaction to morphine may differ from his reaction to OxyContin. Chad thanked us for all the hassle we’d gone through for him, and he promised to send a portal message in the morning updating us.

Sharique, Sage, and I congratulated ourselves on helping keep Chad out of the Emergency Department.

Everything we had done for Chad, all of the phone calls, all of the prescriptions, all of the wrangling with the insurance company - all of it was unreimbursed care. All to save the insurance company a few dollars.

The hospital discharged him with a prescription his insurance company wouldn’t authorize - meds he couldn’t afford - and didn’t let the patient or the patient’s doctor know that the pharmacy had sent a non-coverage notice to the prescribing doctor at the hospital. The doctor who wrote the prescription may or may not have gotten the fax, but would have recognized Chad as a patient who was discharged. Once he is discharged, the hospital doctor has no responsibility for him. The inpatient and outpatient worlds do not really connect anymore.

There are supply shortages of all types of prescription pain meds, everywhere, that come and go randomly. Even when there is a supply, pharmacies don’t want it known because it makes them a target for theft. On top of that, pharmacists are nervous about filling opioid prescriptions due to liability issues.

The insurance coverage of one opioid versus another is seemingly arbitrary and changes from insurance company to insurance company and from day to day with the same insurance company and patient. There is no accountability at the insurance company if they fail to send key information or give bad advice. The prior authorization procedure does not take the needs of patients or doctors into account.

Clinics and primary care physicians face extra administrative hurdles for opioid prescriptions - hurdles intended to reduce the number of illicit prescriptions.

Imagine this vignette repeated with a different variation two or three times yearly for every chronic pain patient a doctor prescribes for, and it’s easy to see why no doctor wants to write opioid prescriptions, to say nothing of the technical skill required to do it and the legal exposure that comes with it.

Chad, after benefiting from state-of-the-art medical care at what is undoubtedly one of the medically best hospitals on planet earth, just wants to follow the specialist’s discharge instructions to relieve his pain well enough that he can sleep and finish healing. All we needed to do was to taper him off OxyContin over a month. He was doing exactly what he had been told to do. I was doing the task assigned to me. We were both frustrated at every turn.

Patients who are prescribed opioids cannot advocate for themselves publicly without inadvertently announcing that there are opioids at their residence, making them a target for desperate drug addicts who will sometimes kill to get a fix.

If they go into the Emergency Department for any reason, the staff assumes they are there only to get opioids. Once the patient convinces the staff that this is not the case, the staff immediately switches to assuming that their symptoms are the side effects of opioids. Once, I found myself nearly shouting at an Emergency Room doctor, “Opioids do not cause a fever. This patient with a fever and a depressed mental status has an infection somewhere. Find it!”

This is the case regardless of the cause of a patient’s chronic pain, but if the pain is due to something the patient might have been responsible for or something doctors might look down upon, like a motorcycle accident, the judgments become harsher. Chad could not have been said to have caused his rare condition, but chances are good the Emergency Department doctors have never heard of it. Having pain is enough of a curse; having to bear the judgments and fears of the medical establishment is just piling on.

The effects of the over-prescription of opioids in the US have been tragic. I reflect that patients with pain are as much victims of the opioid crisis as any child being raised by their grandparents, but Chad’s story is not so simple or photogenic as a tired octogenarian raising a cute 7-year-old. He can’t even talk about it without endangering himself and his family.

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*Chad is a patient amalgam, drawn from the unfortunately large number of patients who have had problems getting their pain medications.

**Nothing in this esstory is intended to be, or should be taken as, medical advice. Please see your primary care doctor for that.

“No, I think it’s actually helping a little bit! I’m definitely less cranky and my joints really do hurt less, just like you said you thought they would, but Alicia continues to be worried about me. She found this article on Substack and thought it was useful. The author says I should ask you to order these 35 tests so that we can tell what’s going to go wrong before it does.”

“Let me take a look at the list and we’ll make a plan. I may not be able to come up with reasons to justify your insurance company paying for all of these, but I’ll see what we can do. Otherwise, you’ll have to pay for them yourself.”

I skim the article. The author runs her own health consulting practice. On most of these tests, she faults doctors for accepting certain results as “normal,” claiming more stringent results as “optimal.” If you do 35 tests and declare a more narrow range to be “optimal,” you’re going to find more things wrong! No one who feels great is going to be attracted to these kinds of articles or likely to have anything easily diagnosable, but some people who don’t feel great will be happy to blame their symptoms on a “non-optimal” lab value. However, if I suggest to a patient that they don’t feel great because they are doing too much or not exercising enough or eating too many donuts, they will feel there’s something wrong with me. This will then between us, eroding trust.

The author tells you in no uncertain terms that she knows what’s wrong with you. I, however, am not always so certain. I envy the certainty of people who feel they know the answers, but I know they are missing so much of the full picture which lies in maybe, wonder, and “I don’t know.”

I also envy that the author has gotten Susan to be asking for a discussion about her cardiovascular and metabolic risk factors. I have tried to have a conversation about these risks with her before, which she resisted. But some article by a stranger on the internet managed to get her attention.

While I’m still looking at the article - it’s long - Susan continued, “When I talked with Sharique I asked her if you would just order these tests, and she said I’d have to come in. I pointed out that I was just in, but she said ordering labs actually takes some time and effort. And besides that, you might want to talk with me about some of them.”

“That is all true. Just putting in orders takes at least half a minute per test. If I don’t enter them during your appointment, I have to do it on time I don’t get paid for.

“Oh, my gosh! I never thought of it like that!”

“Also, what the author says about your insurance paying for it if your doctor orders it is not entirely accurate. They will only pay for it if I am able to provide a reason that makes sense to them. For some of these, I won’t be able to come up with reasons, and others will require some thinking to come up with a plausible reason. If I tried that for all 35 of these, I’d be working on it for well over an hour.

Susan nods slowly. I’m not sure what she’s thinking. Meanwhile, I’m galled at the presumption of this author who has managed to insert herself into our relationship.

“Let’s start at the top of the article. The first thing I notice is that she doesn’t put her credentials in the article, just her name. I’d like to know what her credentials are.”

I do a quick search on my computer: “She’s a physician assistant and a PhD.”

“What does that mean?”

“A physician’s assistant is a person who has usually three years of post-bachelor’s degree training in medicine. In most states their work has to be supervised by a doctor - the kind who has been to medical school. She’s allowed to call herself “doctor” because she has a PhD - but that’s a doctor of philosophy, not a doctor of medicine. And that school she got her PhD from grants degrees for online work and says you have to write a 100-page dissertation to graduate. And, well, she does know how to write.

“I notice that she has a different attitude about health care than I do. There isn’t a right or wrong attitude to have here; it’s just how things seem to different people.

There are three basic attitudes people take. One is that neither the author nor I take. These folks say if you feel fine, you are fine, and doctors are usually guilty of over-reaching. They think things like blood sugar and blood pressure don’t need to be monitored or controlled. They don’t do any of the recommended screenings. I don’t see many patients like this, because they don’t go to the doctor often, and when they do, it’s usually because they have one symptomatic condition that they will accept care for, but they won’t do any of the other things I usually encourage my patients to do.”

“I heard a story about a friend of a friend like that. The woman had to get her blood pressure under control in order for the dermatologist to be willing to remove a huge skin cancer on her forehead.”

“Yep, that’s the kind of story I’m talking about.”

I smile. Of course, I can’t mention that the story involves me.

“The opposite from that is people like your author here, whose list of labs is the same for people who feel great, a little off, or half dead. For example, even if you don’t have any symptoms consistent with folate deficiency, she feels your folates should be checked and if they’re not on the high end of normal, something should be done about them.

“My attitude comes down in the middle between these - and all the docs I know have the same attitude. For things that we can rely upon to give you symptoms, there’s no point in running up costs doing tests if there aren’t symptoms. Only problems that don’t give you symptoms for a long time - like cholesterol and blood glucose - should be screened for. A lot of the things on this list, like uric acid and ferritin, should give you symptoms if they are abnormal. I trust your body to know what it’s doing for most things. They taught us in residency that the dumbest hypothalamus is still smarter than the smartest doctor and I think that’s good advice.

“Also, I am flexible and when I read about something that seems to work or that seems to make a difference for patients from a different kind of practitioner. I try it out. I spend a lot of mental energy noticing what things people say make them better and what things improve health over time.”

Susan has been listening carefully and responds,

“It reminds me a bit of when Alicia was little. Some people said to just let kids eat what they wanted; that their bodies would tell them what to eat. And some said to be really careful to avoid additives and to make sure things like vegetables and meats were balanced. We weren’t at either extreme. Some of Alicia’s friends’ parents would send their kid over with snacks. They were horrified that their kid might get apple sauce sweetened with sugar at our house. Some sent their kids with twice as much junk food as they thought their kid would eat, like they were afraid their kid and mine would starve if they didn’t. We felt like the parents sometimes spent more energy on the ideas about what their kid should eat than they did about having a pleasant and delicious dinner most nights.

“Now that these kids have grown up, a lot have eating disorders or are overweight. And Alicia - almost alone among her friends - has never had more than a size of oscillation in her jean size. There really is something to be said for avoiding extremes.”

“That has been my philosophy, too, Susan.

“Let’s take a quick look at your chart and remind ourselves of what we know about your health and your lab numbers as we’ve done several of these labs already. Your sugar has been about five points into the pre-diabetes range for three years. I encouraged you to exercise more and eat a lower glycemic index diet. We talked about having you see the diabetes educator, and you felt like you could figure it out from the internet. I’m not sure how well that’s gone.”

Susan answers, “Well, it’s just so hard to get started exercising and once I come home from work, I don’t want to leave my house. I felt like the information the diabetes educator would tell me was available on the internet and I didn’t need to spend $30 to get it, but it’s hard to get started there, too. I just feel overwhelmed when I read about it. I did decrease the number of pumps of flavor I get in my iced coffee from three to two. I don’t really miss the extra pump now that I’ve gotten used to two.”

“Well, that’s not nothing! Each pump has five grams of carbohydrates in it. That’s like a third of a slice of bread, and it’s the kind of carbohydrate that is immediately available so it’s more likely to make your sugar go zooming up and then zooming down. Some people find that these rapid swings are what make them feel tired and brain foggy.”

“Now, that’s interesting. How would I know what my sugar is doing after I have an iced coffee?”

“The easiest way would be to get a continuous glucose monitor. They cost about $40 and it will tell you your sugar continuously for two weeks. You can run experiments like having an extra pump in your coffee or going for a walk after dinner and it will give you a very detailed idea of what foods and activities have what effect on your blood sugar.”

“How do I get my insurance company to get me one of those?”

“You don’t. You have to pay for it yourself. You can find them sold on the internet. As far as I know they all work okay.”

“Wow! That seems like it would be really helpful info. I’m going to do that. What kinds of experiments should I run with it?”

“That’s a question for the diabetes educator. That’s the sort of thing she specializes in.”

“Okay. That seems like it might be worth paying $30 for.”

“Think about it. Hannah can schedule you if you want to do it. Buy your monitor before your appointment and she can help you put it on if you want. It’s not painful or difficult, but some people feel nervous about it. Also, look up glycemic index to give you food for thought, haha, before you see her.”

Inside, I am jumping for joy, but I don’t want to show that for fear Susan will change her mind.

“Great idea! Do you have any ideas to get me motivated to exercise?”

“I don’t really except that maybe when you see on your glucose monitor what a simple walk around the neighborhood does to your blood sugar, you may find your motivation.

“It really is interesting to see how our bodies respond when we make changes. Once a patient becomes interested in their body, they often become self-motivating to improve their habits. I think this is part of the appeal of integrative practitioners; they get people interested in their bodies and tracking the results. They can also spend more time with each patient. I can’t spend that amount of time with anyone unless they’re really sick. My patients could benefit from my applying that kind of focused attention on them and their habits, but the system doesn’t economically support that.”

Susan then changes the topic and my joy-jumping evaporates.

“Hmmm, but the author talks about how things can be fixed with supplements.

“Let’s think about supplements for a minute, Susan. If the supplements really worked, don’t you think the manufacturer would do the studies and get FDA approval? That is how to really make money. For example, there is a special kind of high purity fish oil and there are some vitamins that are sold by prescription only. The people who are selling these have done randomized, controlled clinical studies and proven that their supplements and vitamins make people live longer and better. They make a lot more money by selling them as prescriptions than they did over the counter. Most of the supplements these folks sell have not been tested as rigorously as would be required to become a prescription medication, or they have failed in testing but they seem to make sense so some practitioners keep selling them.

“For example, homocysteine. Homocysteine was in fashion in mainstream medicine about fifteen years ago and everyone was hot to check it and prescribe vitamins that lowered it. People with dementia and heart disease have higher homocysteines on average than people who don’t have these diseases so it makes sense that lowering homocysteine might help improve or prevent these diseases. However, when people did studies that lowered homocysteine using a specific combo of vitamins, they showed you can lower it very effectively, but it doesn’t make people live longer or better. There were several studies that showed this disappointing result and western medicine lost its enthusiasm for homocysteine.

“You can’t tell this without doing the studies. If you just rely on what makes sense, you’re treating the labs, not the patient. People continue objecting: ‘well, they didn’t study people for long enough, or people whose levels were high enough, or get them early enough in the disease.’ And all of that may be true, but if there was some benefit, you’d expect to see a whisper of it in the studies and you don’t.

“Other folks might say, ‘what’s the harm in lowering homocysteine, since getting it lower may help?’ The harm is that it all costs time and money. Even though insurance picks up most of the cost, most people have a copay. The vitamins aren’t free. And when you’ve been offered an opportunity to see our diabetes educator, you’ve turned it down because of the copay.

“Also, attention spent on lowering your homocysteine is attention that is not spent on doing things that are known to make a difference such as lowering your blood sugar or getting you to walk around the block more often. If lowering your homocysteine - which seems to be harmless, but not helpful - takes away from an activity that is actually helpful, it has, in fact, harmed you.

“I don’t think there’s any purpose to ordering this.”

I seem to have Susan’s full attention here. Maybe this is the moment I can motivate her to do something about her diabetes.

“The author does the same thing with uric acid. Yes, a high uric acid level is associated with bad metabolic health, and we have a very effective therapy to lower it, but no one thinks that lowering your uric acid causes any benefit except decreasing the frequency of gout attacks. So for people who don’t have gout, knowing their uric acid level does them no good.”

Susan objects, “Well, but if they know what it is, they can lower it and maybe make themselves less likely to get a gout attack.”

“It sounds good, but if they don’t have gout - it’s hard to get fewer attacks than zero. We can’t make you feel better if you don’t have any symptoms. It is difficult to make an assymptomatic patient feel better.”

“I see what you mean there. It sounds so tempting, though, when it’s high, it’s associated with bad things, so you’d think lowering it would be good, but it’s correlated, not causative. But if it’s associated with bad things, maybe there’s a benefit to knowing that so you can avoid the bad things?”

“You tell me, Susan. We know, for example, that someone in this room has a high fasting sugar, and it’s helped her to make one change about her coffee habit, but the labs say it’s not enough, and there is a lot of evidence for the importance of controlling blood sugars. On the other hand, there is no evidence that lowering uric acid level improves any metabolic-related outcomes. So why pay attention to uric acid when there’s something else that really needs to be addressed?

Susan was quiet for a moment. I held my breath. Then she said quietly, “But I want to optimize my health.”

“And I want you to optimize your health, too. I just don’t think checking a bunch of labs and trying to tweak them to somehow be better than normal is going to be the answer. I feel like we know the answer: more exercise and paying better attention to what you eat. But it’s hard and you’re stressed and already doing a lot.

“The author writes like I’m holding back useful stuff from you, and that there are easy solutions with the right vitamins and supplements. I wish it were this simple, but it isn’t. There’s no benefit to me in holding back interventions that will help you be healthier or lower your risk of chronic illness.”

Susan looked at me. “But she says that knowing these values will make me healthier.”

“She actually doesn’t. If you look at the article and read it carefully, she doesn’t say that. If she did it would probably get her in trouble. She tells you to check all these tests and she tells you that a lot of them cause inflammation or other undesirable things and she makes conspiracy theory type comments like ‘almost no one checks this’ or ‘your doctor is not seeing what your thyroid is actually doing,’ like she is letting you in on some secrets that I have been holding back from you.

“I happen to think she is overselling many of the tests as it is, for example, we just talked about how homocysteine is associated with dementia and inflammation, but I think it’s a stretch to say it causes inflammation.”

“Oh, I see. It’s just like we talked about with estrogen - the old correlation -s-not-causation thing again. It’s like having beat-up running shoes is correlated with being in good health, but no one would buy a pair of running shoes and put dirt on them expecting to become healthier!”

“Yes, I love how quickly you come up with these examples, Susan!”

“They are top of mind for me because I spend a lot of time thinking about how to be healthier. I wish I could just take my shoes into the back yard, grind dirt into them, drive the car over them a few times and lower my LDL.”

We both laugh at this image.

“I do, too. I wish it was that easy to get good cardiovascular health. I think you’re old enough to know, there is no free lunch. In order to get the benefits, we have to do reps. Even when we’re tired.”

Susan shrugs. “I guess that’s how life works. I just keep hoping something will get easier.”

“I hear you, Susan. I do, too, but so far, no luck for me.”

We sit silently, each feeling the weight of life, and how hard things are sometimes. I sigh.

“But what she says sounds so appealing! It sounds like she knows secrets to getting healthier. I want those secrets!”

“She’s a talented writer and really good at marketing. They don’t teach us marketing at med school, and while they’re concerned with our bedside manner, we’re not trained to churn out smooth prose.”

We sit in silence for a few seconds. I hand the article back to her. I didn’t want to intrude on her introspections. I had the sense that she was starting to see the article for what it was, and that her putting the pieces together herself would be far more valuable to her than anything I could do, even if I could do it faster. “Keep your sticky fingers off,” I thought to myself, “Let Susan do her own journey.”

She looked at the pages absently, then focused on them, then flipped to the next page, reading, engrossed.

“I see it!” she announced. “The article is one ‘check this. If it’s higher than X, you’re in danger of Y,’ after another, but it doesn’t say that she even has a plan for lowering X or that there is any benefit to lowering X!”

She flips through to the end. “It says that you can pay her $2,500 to get her plan for optimizing your health, but she doesn’t even say what the plan might entail except an individualized protocol. And wait a minute! There’s fine print here at the end saying it’s not designed to diagnose, treat, cure, or prevent any disease. What?”

She flips through the pages again. “She doesn’t say anything about how she’s going to prevent me from getting diabetes and heart disease. It’s all just kind of vague threatening sounding stuff ‘that’s where you quietly develop diabetes,’ ‘don’t let anyone tell you 99 is fine.’

“It’s all so slick! There’s nothing I can put my finger on and say that she promised or actually said. It’s all innuendo and acting like she’s got a secret. Now that I’ve read this more carefully I can see that it is really a skillful piece of persuasive writing. No wonder it got so many likes.”

Susan made a pouty face. “Well, this is so disappointing. I was really really hoping that you could just order these labs and we’d find something wrong that we could fix by my taking the right combination of vitamins and supplements.”

She sighed. “So all you’ve got for me is to cut down on the sugar and exercise more? No secret lab tests that will let me fix it all with some pills?”

“Yup. That’s all I’ve got. If I could make it any easier for you, I would.”

“If that’s the best you’ve got, I see why you’re having a hard time getting patients to do it. Maybe you should take a marketing class and try writing on Substack.”

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*Susan continues to be a patient amalgam and any resembalance to a real patient is accidental.

**Nothing in this article should be construed as or is meant to be medical advice

A special thank you to Istiaq Mian, MD for reading and commenting on an early version of this post.

Here’s Nettie doing what labs are born to do, but she’s not 100% sure about it.

“It affects everything! Because I’m so achy and sore, I grump at my husband and daughter all the time. I mean, I don’t mean to be grumpy, but when you don’t feel well, it’s hard to be as pleasant as when you do feel well, you know?

“Poor Alicia, she doesn’t want to be living with us, honestly, any more than we want her to be at this point in her life. And she can’t afford a place of her own and her life is on hold and sometimes I feel like she picks fights with me just because she’s unhappy.

“I’d like to think about retiring, but with Alicia in the house, I can’t use my quilting room, so my retirement plans are on hold, just like her life!

“I feel like if I could only sleep, I’d probably be fine. I go to sleep okay, and then I wake up at like three or four and I’m too hot, or I’m achey, or both. And then my thoughts get going around and around and around, and I can’t get back to sleep. I didn’t used to be like this. If I woke up, I’d go right back to sleep, but now I’m perseverating and I think I might even be anxious! Or maybe depressed. What is wrong with me?

“My hands hurt. My hips hurt. It hurts to roll over in bed. It doesn’t hurt to walk, but then if I move a little different, like maybe to side step a place where my daughter spilled something on the kitchen floor and didn’t wipe it up, my hip will just zing me! I can’t figure out the exact move, which is also annoying. If I could, then I could stop doing the thing, or I could at least predict it!”

This was quite a change for Susan. Usually, she came in for her physicals and the occasional sinus or ear infection. Today, she had a whole knot of symptoms. Did she have several things going on or one thing causing all of the symptoms? Was she, in fact, depressed? Her life was not what she had been expecting at this point.

I didn’t think she seemed depressed. Chloe had asked the official depression screening questions, and Susan had not scored in the depression range. Of course, it’s just a simple screening test; it doesn’t always tell the whole answer. Sometimes I need to evaluate the patient myself.

A long time ago, I read a study that said that two questions, “Do you have hope for the future?” and “Is there anything you’re looking forward to?” if both were answered affirmatively, it was a good predictor of the patient not being depressed. If either was answered negatively, one had to inquire further. I enjoy hearing how patients answer these questions, so I sometimes ask them just for fun. Today, I would ask them for both reasons.

“So, Susan, is there anything you’re looking forward to?”

“Oh, yes! I feel guilty for saying this, but Alicia moving out! I’m also looking forward to this summer when Pete and I are going to rent a house on a lake up north for a week, just the two of us!”

“And, do you have hope for the future?”

“Oh, golly, yes! I know this is just temporary so Alicia can save up some money and I even think things will get better at home once the weather is nicer and I can be in the garden more because that’s always good for my mood. I know that I should be glad she’s around so much because she could live across the country like some of my friends’ kids and I’d never get to see her and I’d hate that more, but reminding myself of this just makes me feel bad because it doesn’t help and then I feel even worse and it becomes a spiral.”

“I don’t think you’re depressed, Susan. I am wondering if at least some of these symptoms are menopause related.”

“Maybe? I wondered when I woke up the first time feeling hot, but my friends talk about throwing off the blankets and sweating a lot and I just feel a bit hotter than I’d like to. It doesn’t seem nearly as bad so I figured it couldn’t be a hot flash.”

“I agree that these are not dramatic hot flashes, but for a lot of women, they’re like what you’re experiencing, and you do have other symptoms that could be from menopause: the sore hands and hips, the mood changes. You’re the right age. When did your periods stop?”

“At 53. It was the year Alicia went off to college and I figured how fitting it was that when my youngest left, my periods stopped.

“There’s nothing to do for hot flashes, right? I know they gave my mom estrogen, but that’s not good for you, right?”

“When your mother was your age, hormone replacement therapy for post-menopausal women was considered standard. I knew plenty of women who were told in the ‘80s and ‘90s that even if they didn’t have symptoms that they should be taking estrogen after menopause. It seemed to be practically malpractice not to have your post-menopausal patients on hormones. Back then the reasons we had for this were that it made sense given how we understood bodies to work, and that there were plenty of observational studies that showed that post-menopausal women who took hormone replacement therapy were healthier in all kinds of ways than those who didn’t.

“Then in 2005, the Women’s Health Initiative study came out and said that women’s risk of breast cancer, cardiovascular disease, stroke, and some other unwanted outcomes was much greater if they used hormone replacement. Over a short period of time, it became very, very discouraged to prescribe hormone replacement therapy. Few women started it, and a lot of women who had been taking it stopped it.

“This was right at the beginning of my career and a lot of my patients came in and said they had just stopped it on their own. They hadn’t had any symptoms or anything from doing so. At this point, I mostly had quite elderly patients. The younger women mostly needed to be tapered off because they would experience withdrawal effects.

“It’s like we don’t learn anything from the past! We go from one extreme to the other. Hormone therapy is always good; then hormone therapy is always bad. Now, we have a slightly more nuanced idea….”

“Wait a minute! Wait! I don’t understand why with that study in 2005, everything changed. If there were a bunch of other studies that said yes, why would one study saying no suddenly change everything?”

“Great question.The studies that said yes were all observational studies. This means they looked at a lot of women and noticed that the ones who took hormone replacement were healthier and lived longer than the women who didn’t. But a study like this doesn’t tell you about causes. Maybe the women who took hormones were more health-conscious. They were healthier to begin with, and they took more effort to stay healthy. Or, maybe they just had more money to spend on treatments. Wealthier people have better health. See what I mean?”

“Yes, women who buy hiking backpacks are more likely to be healthy, but not because owning a backpack makes them live longer!”

“Yes, exactly. The study that changed everything had 16,000 women, aged between 50 and 79, who were randomly assigned. Half received hormone replacement therapy; the other half didn’t. After five years, women who got HRT had more heart attacks, strokes, and breast cancer than women who got a pill that looked like HRT but did not contain hormones. Although the HRT was beneficial for some other conditions, it was overall so bad that the investigators stopped the trial early and said everyone should come off it.”

“Well, that makes sense, but why do they say now that some women can take it?”

“The effects of HRT were found to differ depending on how long ago menopause was. In the study there were a lot of women who had gone through menopause fifteen or more years earlier and who had not taken hormone therapy until they were put on it for the study. These were the women in the study who had the worst outcomes, but in clinical practice, those aren’t the women we put on HRT. We only use HRT for women who are having a hard time with menopause, and they’re on hormones only for the first few years after menopause.

“Now we think that once a woman’s body hasn’t had estrogen for somewhere around five to ten years, changes take place that make restarting estrogen harmful. However, if the estrogen is just kept going, these changes don’t happen, and it’s okay to continue the estrogen, as long as we think it’s helping.”

“So, in my case, because it’s been five years since I went through menopause, the changes have only started a little bit and the estrogen should be okay?”

“Yes, that is what we think.”

“Okay. That makes sense. Could I try it, and if I don’t think it’s helpful, stop it?”

“Maybe. I mean, sure, you could stop it, but I have to ask you some more questions to make sure it’s safe for you to start, and then we’ll have some logistics to talk about. Also, I’ll want to check some labs like your thyroid and a couple vitamins to make sure nothing else has gone wrong with your body. As long as we’re drawing labs, we’ll do your yearly labs, too.”

“Okay. I’ll fast tonight and visit your vampire first thing in the morning. Ask away.”

“First off, you have not had a hysterectomy, correct? You have all your parts? That’s what your chart says and I want to be sure it’s right.”

“Yes. What difference does it make? This won’t give me my period, will it?”

“Great question. No, you should not have any vaginal bleeding. If you do, I will want to hear about it right away! The reason is because if you did not have a uterus anymore, you could take estrogen alone. Estrogen without progestin can cause cancer of the lining of the uterus (endometrial cancer), so you have to take both progestin and estrogen if you have not had a hysterectomy.

“For most women, the estrogen is what gives them the beneficial effects, and the progestin is needed only to prevent cancer. This means we just give the standard dose. Of course, there are women for whom it’s more complicated. Some need both the estrogen and progestin to be at the correct level in order to feel good, and some cannot tolerate progestin at all. If either of these turns out to be the case for you, Susan, you will need to see a specialist, but it’s a pretty rare woman who needs that.

“Let’s go back to my mental checklist about HRT. As we were saying, you have not had endometrial cancer. Of course, a woman who has had endometrial cancer would need to talk with her cancer doctor about HRT before I would consider prescribing it.

“You have not had breast cancer. Same deal if you had had breast cancer. You would need to discuss estrogen with your cancer doctor and carefully weigh the benefits versus the risks for your specific situation, but that doesn’t apply to you, Susan.

“You have not had a blood clot, according to our records.”

I look up and see Susan shaking her head no.

“Women who have had a blood clot should make the decision about whether to take estrogen with their blood doctor. Your liver is fine. Have you had any vaginal bleeding since your periods stopped?”

“I have not.”

“Excellent. I’m not expecting any, but if you have any, please let me know right away.”

“Okay!”

“You’re up to date on your mammogram. It sounds like you would be a candidate for hormone replacement therapy. It can be done topically, with a patch or a cream, or with a pill. Sometimes we do both at the same time.”

“I’ve never used a medicine that you put on your skin, except an antibiotic cream. I think I’d just like the pill. And why would anyone do a patch and a pill if they could just do one or the other?”

“The main problem with an estrogen pill is that the estrogen is absorbed from your small intestine and goes straight to your liver to be processed. Having a lot of estrogen in your liver at once can cause your liver to change how much it makes of other proteins, and this leads to problems. It increases your risk of blood clots and strokes, for example, compared to absorbing the estrogen slowly and continuously through your skin. But some women just want the convenience of a single pill.

“So, I hear what you said about preferring a pill, but I’d like to ask you to consider the topical methods.

“The first is estrogen cream, which is invisible, and once you’ve put it on, even if you were a nude model, no one would know, but the problem is that it can end up on anyone who snuggles up to the part of your body that has the cream on it. They usually recommend using a forearm so it’s easy to see how it could get on others. It can be a big problem with kids and pets. Another recommended spot is the inner thigh, but that might expose other people who need to be kept away from estrogen.”

Susan giggled.

“For most women, a patch is the best solution for estrogen. There is a combination patch with both estrogen and progestin, set to the most commonly needed dose. This is nice for ease of use. If we opted for that, you’d only have to think about it once a week. Most women put it on their upper buttock about where your fingers would go if you put your hands on your hips. The patches are tiny, about the size of a nickel.

“However, if you need a dose lower than the most common one, there’s no combination patch. In that case, you have to take the progestin in pill form, but you can use a patch for the estrogen. As I said before, there’s some risk to estrogen. So you want to be on the lowest dose that relieves your symptoms. For those patches, there is one that you have to change weekly and one you have to change twice a week. The pills can be taken as either two pills daily for two weeks of the month or one pill daily every day.

“If you need a higher dose of estrogen, we can add an estrogen-only patch to your combination patch to increase your estrogen dose.

“For most women, we fuss with the dose of estrogen a time or two before we find the right level. Less commonly, we find that we need to adjust the progestin level. A few women get side effects from oral progestin. If that happens, you’d need to see a specialist.”

Like many of my patients, Susan decides to start with the combination patch, as it is the easiest solution. I give her the usual caveats that her insurance may reject her choice and want it done another way, but we’ll give it a go. I’ll see Susan again in a month to see how it’s going. I predict her symptoms will be a lot better.

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*The people in this esstory are patient amalgams, and any resemblance to a real patient is accidental.

**Nothing in this esstory is intended to be, or should be construed as, medical advice.

Special thanks for the editorial support of Dr. Amber Hull. She is a US Board Certified Physician licensed and practicing women’s hormone health in Vancouver, British Columbia. She writes about human sexuality, women’s health and life in medicine at Under the White Coat.

Here’s this week’s episode of The Doctor Takes Her Own Medicine

I had been at my desk only a few minutes when Hannah came by to deliver this news.

“Poor Lilly, indeed! Having the visiting nurse wasn’t enough to keep her safe! I hope she didn’t fall down the stairs like we all keep expecting. I’ll just have to wait for the emergency department report.”

The thing about primary care, however, is the only thing that really matters is the patient in front of you. You might be worried half to death about someone else, but it’s only the one in front of you and their problem that you can attend to. Anything distracting has to be boxed up and set aside.

In about two minutes my first patient of the day will be waiting for me. I’ve already begun to box this up.

The necessity of this can be an advantage. Throwing myself into the array of issues that are directly in front of me keeps me from perseverating on problem patients like Lilly. Otherwise would end up spending hours dissecting the past, such as my last interaction with Joann where I had urged her to spend less time doing Lilly’s chores. Perhaps Lilly had decided to do her own laundry and fallen down the stairs? Why couldn’t Lilly see that she needed more help in the home before a tragedy like whatever had happened actually happened? Lilly was so frustrating, and a part of me was angry that she wouldn’t just behave reasonably to spare me from this mental agony.

Chloe appears at my desk. I close Lilly’s box and turn my attention to her as she preps me for my next patient.

“Ken is a patient of Doctor Tom’s. He’s 54 and is here for pain in his right foot. He doesn’t know what he did. It looks pretty painful, just watching him walk. I made sure his medication list is correct. He’s only taking one thing: a blood pressure pill.”

I head off to the exam room where Ken starts telling the story.

“I had a fun day yesterday, nothing crazy, but I musta done something I don’t remember. I had a couple, you know, around lunch time because I knew I’d be there til after dinner and would be safe to drive. It was a family party. I sat around a bunch, talking with my uncles and cousins. I played with the kids a little bit. Mostly just watched them run around in the bouncy house. We went for a walk in the neighborhood and I played with his dog. I don’t see how I coulda injured my foot.

“It’s about a two-hour drive from here. I only see them a few times a year so when I go, I stay all day. We had picnic food for lunch. Two hours south makes a difference in the weather. Usually this time of year, it makes sense to have a barbecue there and it’s our family’s tradition that Joey’s birthday is the first barbecue of the year, but this year, it was a little cold! We had a good time anyway.

“For lunch we always have the standard barbecue stuff, and for dinner, he grilled surf and turf: steaks and shrimp for the adults. The kids got pizza. I felt fine there all day and even felt good when I went to bed last night, but I woke up in the middle of the night to pee and yowza! I couldn’t even walk on the foot! I had to walk on the back of my foot because the front hurt so much!

“I took some ibuprofen and got back into bed because I still had a couple hours I could sleep, but it hurt so much to even have the sheet touch it. I really couldn’t even sleep. It got red hot by the time I woke up and I couldn’t stand to put a sock on. I couldn’t even imagine putting a shoe on so I wore a slipper. Do you think I could have broken it somehow? I don’t remember injuring it.”

“It’s just that one place?” I asked, “No other joints? The other foot is okay?”

“Yep. All fine.”

“If we could parcel off this little piece of your foot, the rest of you is okay? No fevers or coughs or belly stuff or anything else?”

“No. I feel fine otherwise.”

I look down at his foot. It looked completely normal except for the joint at the base of the big toe. I carefully touched the end of his big toe and other areas a couple centimeters away from the joint. No pain. As I moved closer, he began to wince and when I pushed down on the end of the toe to move the joint, he yelled.

I apologized. I had him lift his foot so I could check for any breaks in the skin. I looked the rest of him over to make sure I wasn’t missing anything and told him, “I think you most likely are having your first gout attack.”

“Gout! That’s crazy! I knew it!”

All of the detail about what he ate and drank did indicate a premonition about his condition.

“My Uncle Mike talked about his gout all day and I thought he was just being a whiner. Two of my other uncles said they had gout, but it was under control. I suppose this serves me right! I’m sorry I wasn’t more sympathetic, Uncle Mike! This is really bad! What causes this?”

“When you eat foods that are high in purines, your body breaks them down into urates. Urates trigger inflammation. The body uses them to draw the immune system’s attention. However, sometimes the uric acid level gets too high for the urates to stay dissolved in the blood. When this happens, urates can deposit in joints” - I point to Ken’s right foot - “sending an erroneous signal to the immune system to produce an inflammatory response.”

“We used to think that urate was only a waste product, but now we think that urate actually has helpful roles in the body, at least evolutionarily. One role we’ve realized recently is that urates help keep a person’s blood pressure up in a low-salt environment. It’s hard to find someone living in a low-salt environment these days, but getting enough salt used to be a problem for a lot of the world’s population.

“Interestingly, in general, only about 20% of a person’s uric acid comes from their diet. The rest comes from housekeeping tasks that the body does. However, some people are better than others at making urates from purines and those people are more likely to get gout. Some other people are worse than others at excreting urates in their urine, and those people are more likely to get gout.

“Some people not only have one of these genetic predispositions, but they also have cousins who have barbecues with lots of triggering foods in them.”

Ken laughed.

“And these people are more likely to have gout attacks. It was a perfect storm! And beer, too, right?”

“Yes, beer and distilled spirits - but not wine - increase your risk of a gout attack. As does getting cold and injuring the joint.”

“Well, at least I didn’t injure it! Can you give me something to get rid of this?”

“Yes, I can! Since this is your first episode, I’d like to do some blood tests, just to make sure I’m not missing an infection or anything, but that’s more a formality than anything and I won’t wait for the results to treat you.”

“Good. I don’t want to wait any longer. I had to take a sick day today and I’m not happy! It’s our busy season!”

“I understand! The longer I do this job, the more respect I have for stress. I’ve never heard that stress per se makes gout worse, but stress does make you less careful about what you eat, more likely to be dehydrated, and it changes the way your immune system responds to triggers.”

“I was nice and relaxed on Sunday, during the day, but I did start getting stressed out after I got home and thought about how much work would be sitting on my desk on this morning. Work that I’m not even doing because I’m so stressed out I’ve made myself sick!”

“Well, I wouldn’t exactly view it that way. You have the genes that make you more likely to get gout and your family party put you into a situation that made you more likely to have an attack. You’ll know next time.”

“I sure will! And I’ll be nicer to Uncle Mike.

“I just had a funny thought. If I’m lucky, when my nephews grow up and invite me to their barbecues when I’m old like Uncle MIke, they’ll think I’m a whiney complainer!”

“Yes. And so it goes, right? The generations.“

I pause just a moment to absorb that thought. I love these tiny snippets of recognition of how deep the work we do in the office is, but I can’t explore them. We have medications to prescribe and advice to give.

“Let me ask you a few more questions so we can get you back to your life. I took a look at your chart, but I want to make sure I didn’t miss anything. No kidney disease? No history of ulcers? Or stomach bleeding? Your only medicine is the blood pressure pill? Any supplements or herbals?”

“Nope, none of those. Doctor Tom started the blood pressure pill about a month ago and that’s bad enough!”

“Yes, I was going to mention that. It’s a mild diuretic and diuretics increases your chance for gout attacks, as does dehydration. It makes sense, right? Less fluid in your blood stream means a higher concentration of uric acid. I think I’m going to have you stop that blood pressure pill and give you one that’s not a diuretic because I don’t want to be treating you with one hand and making the problem worse with the other.”

“That makes sense. It was the first daily prescription med I’ve ever taken and I was only on it a couple months!”

“Okay. I’ll send in a different one. I hope this one doesn’t cause you any problems. I don’t think it will.”

I choose one and take a moment to list off the side effects and explain to Ken how to take it. “We’ll set you up for a nurse visit in a week to check in on it.”

“Now, to treat your gout, I’d like to send in a prescription for colchicine. This is a medication you can use specifically for gout and if you have another flare - and you probably will - you can start it right away. I think the ability to start the medication at the first signs of a flare is a benefit because once you’ve had one gout flare, you are not likely to confuse the next with anything else and the treatment works right away. There’s no need to suffer an extra minute.”

Being able to give the patient a home supply of the medication is a real benefit of colchicine. Alternatively, I could prescribe steroids for a gout flare, but I do not like to give patients a home supply of steroids to use for future flares because I don’t want patients to use them to treat something else. The third usual medicine used for gout flares is naprosyn which is available over the counter making it cheaper and easier to access, but it is more prone to side effects, so I do not encourage its usage as the initial treatment for gout.

I explained to Ken how to use the colchicine and described the main side effect: nausea. I checked his pharmacy and allergies and walked him to the front desk.

“If you make a habit of getting gout, if you have enough flares that it would be worth taking a second daily pill to keep them away, let Doctor Tom know and he’ll give you a preventative pill.”

“Will do!” Ken said. He looked much more cheerful now than he had at the beginning of the visit, although, of course, he was still wearing a slipper and walking on his heel, but hopefully both of those would be resolved by tomorrow.

That had been an easy visit and it had distracted me from perseverating on Lilly for a good fifteen minutes. When I sat down to write his note and notify Doctor Tom that I had changed his patient’s blood pressure regimen I noticed that I had a new emergency department note. It was about Joann.

Did something happen that sickened both Lilly and Joann?

I open the document. Joann had fallen in the shower!

Lilly and Joann live across the street from each other. Hannah must have seen the emergency vehicles as she drove by and assumed they were there for Lilly, but they were really there for Joann!

Her son, Scott, had called the police for a wellness check when Joann didn’t call him as usual at eight am. It used to be that Lilly and Joann were each other’s morning check-in buddies. I guess they hadn’t healed their rift.

I paged down further. Her vitals in the emergency department were normal. Her labs showed a slightly low potassium. Maybe she wasn’t eating well. Her imaging was fine. EKG, fine. Imaging of her hip and knee showed lots of osteoarthritis, but no fractures. Thank goodness, the fall had not caused a brain bleed. The emergency department doctor asked for admission to the cardiac floor for overnight observation.

I went into wondering mode. I wondered what had happened to Joann’s heart rhythm. I wondered when Lilly would stop being upset about Joann saying she needed to take better care of herself. This fall demonstrated that she had been wearing herself out.

I marveled at how, despite feeling that I had not missed anything to worry about, I had missed this scenario.

I wondered again how Barbara had ended up as one of Lilly’s helpers and said a prayer of gratitude that she had.

I figured these answers would reveal themselves in good time. For now, I had an 87-year-old with a tick bite waiting on me.

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*No patient in this esstory is a real patient; they are all patient amalgams based on people whose cousins give them gout attacks and people who like to walk in New England woods.

**Nothing in this esstory is or should be interpreted as medical advice. If you want that, you’ll need to fail a wellness check by the fire department or call your doctor’s office.

The first in my “The Doctor Takes Her Own Medicine” series about attempting to develop habits that will help me age gracefully.

“I’m doin’,” John says in his remarkably slow and steady cadence.

I remembered this 52-year-old diabetic did not have children and intermittently had a girlfriend. The usual questions about family were not going to work well with him.

“How’s work?”

“I got seven more years ‘til I can retire.”

“I can see you’re looking forward to that. What are you going to do then?”

“Not work.”

Building rapport with patients this laconic is no easy task. Fortunately, this was just a quarterly checkup on John’s diabetes and not a cocktail conversation contest because John and I would have been in competition for last place.

A competition John could win, however, was for being my worst-controlled diabetic. His A1C was usually quite high. Ideal would be around 6. Today John’s was 10.2. Even if his a1c was 8.2, I’d be alarmed. 10.2 is quite high.

“How do you think your diabetes control has been this quarter?”

“Same.” He paused a moment. “Not good.”

The first step of motivational interviewing is to engage the patient. I was failing. My problem was that I didn’t have an angle that mattered enough to John. John felt well enough that he wasn’t motivated to do anything about his diabetes, despite my repeated warnings about the dangers.

“You’re right. Your A1C is 10.2. This means your average sugar is around 240. That’s pretty high! It should really be more like 100. We try to control your blood sugars because higher blood sugars are hard on your body. You’re retiring in a few years. We want you to enjoy it!”

“I feel okay.”

There was a pause which I wanted to fill by asking a question, but I couldn’t think of one. Then John spoke again.

“My girlfriend says I need to eat better. She’ll make us a nice salad and then I feel tired afterwards, and a little shaky, like, and sometimes even kind of dizzy.”

“Do you have a sugar meter at home?”

.“Yup.”

“Do you ever check it when that happens?”

“Yup. It might be around 160. I know that’s low for me, so I drink some orange juice and then I feel good again. I don’t think my body likes my sugars any lower than they are.”

“Yikes, John! That’s a problem! 160 is not a low blood sugar level at all, but your body has gotten so used to functioning with your sugars in the 200’s that anything lower feels bad to it even though it’s actually better for it. We’ll have to sneak better control in slowly so that your body can get used to it.”

John looks doubtful. I feel doubtful. The best analogy for this situation I’ve come up with is if you leave a dog out in a New England winter, it will not be comfortable and will grow thicker fur to accommodate to the cold temperatures. Then if you bring the dog inside the house, the warmer temperature will be better for it overall, but because it’s got the thick fur, it won’t be comfortable at a normal inside temperature until its body has made some adjustments to ge used to the higher temperatures, but because John is not a dog, I don’t think he’ll find this explanation compelling and I keep it to myself.

We’re at an impasse. He has previously told me he will absolutely not accept insulin. The only ways to control his diabetes better are improved diet and exercise, which he has not been able to do for the six years I’ve known him. However, now he has a girlfriend who shows at least some interest in helping him.

Hmmm. Maybe that’s the angle I’ve been looking for.

“I wonder if your girlfriend would be interested in meeting with our diabetes educator to learn more about cooking for someone with diabetes?”

“Nah. The last thing I need is her telling me what I can’t eat. She’s already got a lot of ideas about that.”

“Okay. Maybe if she met with the diabetes educator, she could learn more about bringing your sugars down slowly?”

“No. Now that I know that really is it, I’ll just drink a glass of orange juice with dinner when she makes a salad.”

That will be counter productive in lowering his sugars; although, I think on balance he’ll still be ahead if he eats a salad.

I wonder if he’s having any of the common symptoms people with diabetes get. Chloe had done the monofilament test when she roomed him and he was able to feel his feet everywhere, but maybe he was having some earlier, more subtle symptoms.

“Do you feel like your feet are burning or tingling sometimes when you lie in bed at night?”

John looked surprised, “Yeah, sometimes.”

“That is a sign that the diabetes is damaging your nerves. The extra sugar in your body kind of jams up the works, and then the nerves in your feet send faulty messages back to your brain. That’s usually the first sign of actual damage to your body from your diabetes. It usually slowly gets worse and starts creeping up to your ankles and legs. It can affect the other nerves in your body, too, the ones that control your autonomic nervous system. Sometimes it can cause your stomach to empty more slowly or can even affect how you function in bed.”

John turned bright red and glanced nervously around the exam room as though someone might have snuck in.

“I have that. I feel so bad. My girlfriend thinks it’s her fault and I tell her she’s so beautiful - and she is and I love her so much and she’s so good to me. She’s the best girlfriend I ever had. I don’t know why I’m so lucky. I don’t know why he doesn’t work right. It might be my diabetes making him stay soft like that? Oh, that’s gotta go.”

“It might be other things contributing to it, too, and I hate to say it, but some of it might not be reversible at this point….”

“Well, if it might be reversible at all, I’m going to do it! I bet if I just eat more salads and maybe take the orange juice with me when we go on our after dinner walks and only take a little bit and only if I need it. I bet I can bring my sugars down without feeling awful. Now that I know what my high sugars could be interfering with my relationship with Arielle, I can put up with a little bit of dizziness and tiredness, too.”

“Are you sure you don’t want to see the diabetes educator?”

“Nah, I know what to do. I just never knew the reason before!”

I’m pretty sure I’ve mentioned this potential symptom from his diabetes, but perhaps not at a time when he had a girlfriend. Maybe “knew the reason” means “had a reason.”

“Okay. What about the meds for erectile dysfunction, like viagra?”

“Maybe, but are they safe?”

“They are actually among the safest medications, in general. The main thing to worry about is that you can’t combine them with a kind of medication called a nitrate because they might lower your blood pressure very far. You don’t take any of those and the only time someone might give you one is if they think you are having a heart attack. So, if you have chest pain and you happen to have taken the medication within the previous, maybe 48 hours, mention it to them.

“Of course, they can cause all kinds of side effects. The most common is headache, but there are a bunch of other ones.

“Back in the olden days, when they first came out, we used to get samples. I would give my patients a box of each brand and ask them to report back. In general, my patients felt they all worked about as well as the others, but they liked one more than the others because it lasted longer. It was sort of a nuisance to have to take the pill an hour or two beforehand and then if you guessed wrong about how things would play out, you’d have wasted a pill and couldn’t take another one for 24 hours.”

“I guess I’d like one of the long-lasting kinds. I don’t think I’m going to need them because I’ll just fix my sugars, but I don’t want to have to call back and ask for it.”

“That makes sense. What about a continuous glucose monitor? It can help you figure out how to get your sugars down. Your insurance won’t pay for one because you’re not using insulin, but you can pay out of pocket for one. They’re around $40 for a two-week sensor. You could use one now so you could have more information and then maybe again in a couple months to see how much you’ve improved, and I could see you back in three months to recheck your A1C, like always.

“You might discover that some foods make your sugar go up quickly or learn what number it is that you start to feel bad at and maybe you can hold off on the orange juice just a little bit and teach your body it’s okay at that level. Hopefully that number will start going down towards normal as your body learns and you get better control.

“For instance, I had a patient with all the physical symptoms of hypoglycemia and she learned with the monitor that her sugar never went dangerously low at all. She had all these symptoms - heart pounding, sweaty, shaky–when her blood sugar went down rapidly even though it never went very low at all. She realized that eating simple sugars like candy right before exercising was a perfect setup for this. She switched to a protein bar for her pre-walk snack and the problem went away.

“I think you said you sometimes go for a walk right after dinner. The walk will lower your blood sugar, and if you’ve had a low-carb dinner like a salad, you might be starting from a lower place than usual.”

“I bet you’re right. I like the idea of a monitor and I know the numbers will tell me what is working and what is not working. I sure would love to be on less medicines for my diabetes.”

“That might be something we could do, John, but first we have to get your sugars under better control. I really wouldn’t want to make any medication changes unless your A1C was in the 6s. It sounds like you know what to do; we just have to get you doing it.”

“Otherwise, you’re feeling okay. No chest pain? No changes to how much exercise you can do?”

“Nope. I’m fine.”

“Up to date on your eye exam?”

“Scheduled for next week. My girl has got me organized.”

“Someone has to. I’m glad.”

“Alright. We’ll see you in three months.”

I walk him up to Hannah and head to my desk to write today’s note. It is very different from any note I’ve written for him before. Hopefully next quarter his diabetes will be under good control and we can talk about decreasing some of his pills.

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*Everyone in this esstory is a patient amalgam and is not intended to resemble a real person.

**Nothing in this esstory is, or should be construed as, medical advice. Please see your doctor for that.

Loons on the lake. When the second one comes up, the first one makes a soft loony call.

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“Sharique? It’s Amy. I was at a health fair at church and they said my blood was low. What do I do?” Nurse Sharique had typed up Amy’s voice message and sent it to me. She added, “Labs and bring her in?”

Sharique has been my nurse for a few years now and almost always knows what I will want.

Amy’s report of “low blood” probably means anemia. It might mean low blood sugar; however, this seemed less likely because that usually comes with symptoms. It could even mean low blood pressure.

Communicating with Amy is always a bit of an adventure. I wonder what more will be revealed when we see each other.

I check Amy’s most recent complete blood count: four years ago, normal. A lot can happen in four years. Also, the equipment at the health fair could be inaccurate.

I respond, “Perfect,” and put in an order for a complete blood count.

When Amy’s labs come in they confirm what she found out at the health fair: she’s anemic. Anemia is having too little hemoglobin in the blood. Amy’s hemoglobin is at 10.5. Normal is roughly 12 to 15 for women and 14 to 16.5 for men. The metric is in grams of hemoglobin per deciliter of blood. Women’s hemoglobin is lower because testosterone stimulates red blood cell production, and menstruation causes red blood cells to leave the body.

Anemia can be caused by either having too few red blood cells, too little hemoglobin in the cells, or both simultaneously. Red blood cells are made by the bone marrow, so too few cells points to a problem there. Too little hemoglobin in the cells is usually due to iron deficiency. A complete blood count gives additional data so we can assess the cause. These are the Mean Corpuscular Volume (MCV), which is about the average size of the cells, and Red cell Distribution Width (RDW), which is about how much size varies from cell to cell.

Amy’s MCV showed that the size of her red blood cells was normal. Her RDW showed high variation in cell sizes. Instead of having a lot of normally sized red blood cells, she had a lot that were too small or too large. This points to something complicated. Usually it means that young cells are being released from the bone marrow before they’re fully mature. These are the large cells. The small cells are the mature ones, and they’re small because they don’t have enough iron in them. But, it could mean other things. We would need more lab tests to see.

Usually, red blood cells are all shaped the same, like little donuts. If there are many differently shaped cells, the lab will note it. Amy’s cells were normally shaped. Odd shaped cells might mean a genetic disorder or destruction of the red blood cells in her body.

A complete blood count also gives the number of platelets and the number and kinds of white blood cells. Amy’s platelets and white blood cells were both normal. If both had been abnormal, that would point to something going wrong in the bone marrow, perhaps cancer or fibrosis. With just low platelets, it could be a combination of alcohol abuse and bleeding. With just low white blood cells, it could be leukemia or a deficiency of multiple nutrients.

To further diagnose Amy’s anemia, I need Amy’s iron status. That requires a separate blood draw. The blood for a complete blood count is drawn into a tube with a lavender top (also called a purple top). These tubes contain an anticoagulant. To get a reading for iron requires a tube with gel in it that separates the serum from the cells. Those tubes have gold tops. There are dozens of different tube types needed for various types of blood tests, although most of the tests we do use only five types of tubes.

In the olden days, one could ask the phlebotomist to draw a gold top just in case, for situations like Amy’s. The tube would be sent to the lab but not analyzed unless we asked for them to be added on. This prevented the patient from having to come back to give an additional blood sample. Nowadays, labs no longer take samples for just-in-case use, and insurance companies won’t pay for an iron until we know that the patient is anemic. Presumably, this appears to them to be more cost-efficient, but it’s less efficient for doctors and patients, which encourages gaming the system. For example, one way to work around this is, for a patient with other diagnoses, to order a blood test that uses a gold top and that the insurance company will pay for based on the diagnoses that the patient already has, even though, strictly speaking, the test I am ordering is not medically necessary. Then the lab will have a gold top. They’ll hold that tube for a week, in which time we can add the iron once we have a diagnosis of anemia. A profitable move for the lab, but I think in the long run, more costly for the insurance company, and definitely more work for us doctors. This workaround requires me to think a couple steps ahead and to predict what is most likely to be wrong with Amy and what additional tests that will cause me to need. This is tricky. Sometimes I can figure it out; sometimes I can’t.

Amy came in the next day to discuss her labs.

“Doctor Mary! Thank you for taking me right in. I worry about what my lab shows. The health fair was real nice. There was a nice lady who pricked my finger, real quick, it kind of hurt for a long time afterwards, two or three or maybe even more days. And they had someone who checked my blood pressure and my blood sugar and they weighed me and said I was perfect. I don’t agree. I think I could use to gain five pounds right up here and lose five pounds on my thighs, but I guess that would still be the same weight, but it really would be good to move it around. And the lady who took my blood said my blood was low. She said she couldn’t say why it was and that I should talk to you. You know what I hate? The streetlights on Gilmore are too dim now. When we left, I couldn’t really see very well and I was worried I’d trip over the sidewalk because it’s so uneven. The big trees are nice and everything, but they really mess up the sidewalk there. I don’t know why they changed the streetlamps. My cousin’s neighbor is on the planning committee for town. Maybe he knows. I’ll ask him next time I’m there. That will probably be Memorial Day because my cousin has a big party and the neighbors come, even Mr. Duggan, who I used to think was nice, but a couple years ago, he kind of came on to me and I try to stay away from him now. What did my lab show?”

Sometimes I worry that Amy will never return to the topic at hand, but she almost always does. Being in the exam room with her is a little like watching a GoPro of an expert athlete in a high-speed sport where they’re sometimes upside down; I am completely unable to control where we’re going or take in the scenery rushing by. Somehow, we end up at the bottom of the mountain without breaking our necks.

From my GoPro video of my appointment with Amy.

“The lady was right, Amy. Your blood count is a bit low.”

“I knew it! I’ve been getting short of breath when I chop up vegetables.”

I made a mental note to come back to this later. I thought Amy was pretty active and routinely did stuff more strenuous than standing at the counter and chopping up vegetables, but any shortness of breath catches my attention.

“I wonder, Amy, when was your last period?”

A common reason for anemia is blood loss due to heavy periods. At 53, Amy might be still having them or might not. Sometimes periods get heavier as one approaches menopause. Chloe has already collected this information and put it in her chart, but it’s usually faster to ask the patient than to look it up.

Usually.

“I can’t rightly say, Doctor Mary. It was either before or after we went to Spain in 2022. My aunt, I think you know her, Marlene, said that we should really go to Spain because her father, my grandfather, of course, well, he wasn’t from Spain, but he went there to fight in the war, either for or against Franco, you know, like lots of young men his age did. He said he didn’t want to be left out. And she said we should go there and see Spain. She paid for me to go, too, which was super nice because I couldn’t afford it, you know. All I had to pay for was my food which I would have had to pay for here anyway, but it was kind of expensive there. I remember it was right around the time we left because I remember taking my black shorts with me in case I needed them.”

“Okay. So no bleeding since more or less that time?”

“No.”

It sounded like her cycles were not a source of blood loss. The next most common site of blood loss is the GI tract. I usually ask about visible blood and diarrhea. Blood tends to be irritating to the GI tract, and if someone does not have at least intermittent diarrhea, upper GI bleeding is less likely. If they don’t actually see blood, lower GI bleeding is less likely. Neither of these are absolutes, but they can give me a place to start my thinking from.

“Do you ever see anything that looks like blood or coffee grounds in your stool?”

“Coffee grounds? No, sometimes my poop looks like coffee. Well, more like coffee colored cake batter.”

I rejoice internally. I got the answer to my next question. She sometimes has diarrhea.

“What would make my poop look like coffee grounds?” But I won’t be getting off so easily.

“That is what digested blood looks like. For example, if you were bleeding in your stomach and your body was digesting it.”

“Oh, I see. No. Sometimes I see stuff that’s only partly digested. And I had a terrible stomachache after eating a sandwich at my neighbor’s house. It was sloppy joe and I don’t eat meat at home; it’s, well, I always say it’s too hard to cook it at home, but really it’s because it looks too much like one time I saw a deer that had gotten hit a couple blocks from where I live and I said to myself that looks just like the meat counter and just then I saw all the flies on it and that put me off of meat fairly since then. I mean, I’ll eat it when someone offers it to me, especially if it’s chopped up a lot and doesn’t look like a slab, but I think she cooked it okay, it’s just that my body wasn’t used to eating meat because I only do it every once in a while.”

I wondered if she might be iron-deficient because her diet didn’t contain enough iron. It is certainly possible to get enough iron from a vegetarian diet, but I wondered how balanced Amy’s diet was. I wondered how frequently she ate meat and how frequently she had diarrhea. I noted I still hadn’t gotten an answer to whether or not she had seen actual blood in her stool. I wasn’t sure which avenue to head down first. Asking about how often she ate meat seemed like the natural question after the apparent conclusion of her statements about her stool.

“Oh, only twice a week. On Sunday and Wednesday at church dinner and sometimes for lunch like when Stacy had the extra sloppy joes. She had had a barbecue for her grandson’s kindergarten graduation. I couldn’t come because I had already promised my aunt I’d go shopping with her, but she saved me some leftovers. I had a piece of the cake, too.”

That seemed like enough meat to supply her iron needs.

“And did you say you don’t see blood in your stool ever?”

“Never. I think I’d be right in here first thing the next morning if I did.”

“Okay. Let me take a quick look at your chart. I wonder if you had a colonoscopy ever.”

“I did. Don’t you remember? I did it right when I turned 50! It was so easy. I mean the prep was awful, but then I went in and they put me to sleep and the next thing I knew they were done. I had my next-door neighbor drive me home. She didn’t mind and I help her out with her dog. I really enjoy it, but she feels like it makes it so that she owes me something. She takes me to the grocery store and I feel like I get the better end of the deal, but I suppose really Trixie gets the best of it!”

I looked it up. She had had a colonoscopy three years ago and it had been normal. She had not had an endoscopy at the same time. She may not even have iron deficiency, and in order to find out I would have to have more labs drawn. There was probably no point in asking more questions right now without more bloodwork, although I really would like to know how much alcohol she drank. I wondered what would happen if I asked. I still hadn’t figured out if I needed to worry about her being short of breath when she stood at the counter, cutting vegetables.

Amy had continued talking while I was looking up this information. She was now looking at me expectantly. I hope she hadn’t asked me a question.

“I’d like to draw some more labs next, Amy.”

“Okay. What are you going to check today?”

“Your blood had some cells that were too small and some that were too large, so I’d like to check the causes of both of those things: iron studies, B12, thyroid, and a lab to see how many of your blood cells are immature. Sometimes the bone marrow pushes the red blood cells out before they’re ready to go. That can be a cause of cells that are too large, too.”

“Okay. I’m glad you’re checking my iron. I didn’t know there were things besides iron that could make you anemic. I had to take iron pills when I was in high school because my periods were so bad, but like you said, I haven’t had one in a few years.”

I wanted to ask her about symptoms like tiredness, but I also wanted to ask her about alcohol, and I was pretty sure we were way over our twenty-minute visit. I considered which I wanted more: answers or staying on schedule. I chose answers.

“I have a couple more questions, Amy. First, how much alcohol do you drink?”

“Oh, I had a glass of champagne for New Year’s and that was my last one. I’ll probably have a beer on July Fourth and a little bit of rum in my cousin’s fruitcake at Christmas time.”

“Okay. Not much at all. Alcohol is not good for your bone marrow.

“Do you have any symptoms from your low blood? It’s not very low, and you might not, but you might. Do you feel tired at all?”

“Tired? You know me, Doctor Mary. I’m the Energizer Bunny! I notice I’m getting a little bit older and I can only walk Trixie two miles in the morning. It might really be because Trixie is getting older, but it might be me. I don’t know for sure, but I don’t think I am.”

If she can walk two miles, it is unlikely that anything bad is going on with the shortness of breath when she chops up vegetables. I’ll defer asking her about that.

“We’ll do the labs today and call you with results.”

“Could I come back to get the results, please? I like it so much better when I can ask you questions right away. I get so anxious waiting for the nurses to call me back with the answers.”

“Okay. They’ll take about a week to come back, so we’ll have Hannah schedule you in one week.”

I walk Amy up to the front desk to get her on my schedule. As I say goodbye, I take a deep breath. I wonder if it’s even busier inside Amy’s head than outside.

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*Amy and all other characters are amalgams of people I have known in real life. Amy has been toned down compared to my real life patients who have such busy heads.

**Nothing in this esstory is, or should be construed as, medical advice. If you want that, please discuss with your primary care doctor.

Bonus video. Nettie, flowers, New England woods. Please enjoy.

Our bridal veil bush and daffodils.

Last week, I was surprised when it turned out to be Friday, and then I was too tired to make a video. This week, I made a sweet video of wildflowers and Nettie and spring in New England forests, and I have been trying for the last hour and a half to get my iPhone to sync or, failing that, to get the videos to upload to Substack so that I could at least post them. Neither of those things is going to happen tonight despite multiple restartings of my iPhone and much searching of the internet. I hope everything mysteriously fixes itself while I sleep tonight so that in the morning I can post the videos to Substack notes. I am not hopeful.

I had this idea that I would put videos at the end of my post with the kind of content I’ve been putting in my newsletter and that after a few weeks of open to the world videos, I would paywall them and then maybe that would help me build a paid subscriber base. The universe seems to be sending me a clear message that this is not a good idea.

At least, I can show you a picture of Nettie graduating from puppy kindergarten.

I hope your week is better than my evening has been.

“I know, Corinne, it sure does seem like these things wait to spring out at the worst possible time. What you say about the pain is what all my patients who’ve been through labor and then get kidney stones say. It’s brutal.

“I’ve got the Emergency Department report. Let’s see how closely it matches what actually happened.”

Of course, what Corinne will tell me is her report. I’ll never know what actually happened. I’ll just have to compare the reports and use my best judgment.

“Well, I was actually getting ready for a date when I felt a sudden stab in my back on the left. I’ve had back pain before, but this was way, way worse. It took my breath away. I wasn’t sure I’d be able to keep the date at this point which was very disappointing because I liked this woman and we had a really fun evening planned. Most of the women I meet don’t get second dates, but this was our fourth! We had tickets for Wicked. I haven’t seen it yet so I was determined I was going. Anyway, the pain got better then worse again and kept coming and going. Somewhere along the line, I tried peeing and that made it go away so I thought maybe it was a weird UTI and I took some AZO and kept getting ready.”

“Okay, Corinne, I don’t want to interrupt your story, but that’s your first mistake**. Even if it was a UTI, if it was causing back pain - especially serious back pain - you need to call us! If it were an infection, the back pain means it’s spreading up to your kidneys, and that can be life-threatening!”

“Yeah, I know that now, but it was Friday night and your office was closed and I knew whoever answered the phone would just say ‘Go to the ER’ and I didn’t want to. What’s more, I didn’t want to pay the copay. I figured I’d go out Friday night, then lay low the rest of the weekend and call you on Monday.

“Ha! That’s not how it played out at all. We had dinner reservations. We were going to the city anyway, so we made plans to have dinner at a super cute Italian restaurant that has been getting great reviews. She drove, thankfully. The ride there was agony. I felt every bump and every frost heave on the road. I didn’t want to complain because, well, who wants to listen to their date complain about their physical ailments?

“I never even made it to the restaurant. About fifteen minutes into the car ride, I began throwing up. I pretty much would have preferred to die at this point. Imagine! I felt so awful physically and I was puking. I’d had the good sense to tuck a plastic bag into my purse - you never know when you might need one, you know - so at least I didn’t throw up onto her car seats.

“She pulled off the expressway and asked me right away if I wanted to go home or to the hospital or what. I was so miserable I said to take me to the hospital.

“I thought she’d want to get away from me as soon as possible, but she stayed with me! They took me right in. I think they could tell I was pretty sick and maybe they didn’t want me throwing up in their waiting room.

“As soon as I told them what happened, they said they thought I had a kidney stone and I realized that was of course what I had, but I’d never had one before so I didn’t know.

“Chris said she’d had them before and she couldn’t believe I’d been so tough as to try to go on our date. I told her I had really been looking forward to it. I didn’t say what portion had been because I wanted to see Wicked and what proportion had been because I wanted to see her. I let her extrapolate and interpret.

“Once I felt a little better and could see how kind she was to me and how concerned she was about my well-being, it felt like not a bad thing really. I got to find out that she’s kind and not too grossed out by vomit. You know, when you’re older and dating, you know that whoever you’re with, if it lasts, is likely to be with you when you die or you’re going to be with them when they die. I mean, you know that, when you’re younger, too, of course, but it’s more front of mind when you’re 61 than when you’re 21. It actually is more important to think of how they react to sickness.

“Anyway, she was super kind in the emergency room and stayed with me until they took me to the operating room to put the stents in and then she went home. She called the next morning and - this is so sweet! - she said she’d bought tickets for Wicked for three weeks out. She thought I’d be better by then. She said she’d called and canceled when I was off getting an X-ray or something and that they had given her a partial refund because they could hear she was in the hospital and wasn’t just making the story up about her date getting sick. She’s the kind of person that other people just want to be nice to. That’s another thing in her favor, honestly. And I was impressed that she thought to call about the tickets. A woman who knows the value of a buck is a good thing.

“They took me to the operating room and put a stent in and said if the stone doesn’t pass on its own, they’ll do a procedure to break it into little pieces later this week. What are they talking about? Why did this happen to me? What is a stent? And why does it hurt so much?”

“Well! That’s quite a story, Corinne! We have to get you feeling well enough to enjoy Wicked. We have a deadline here. I hope they told you in the Emergency Department to drink a lot of fluid. Kidney stones are one of the few conditions where I encourage people to drink more water than their body tells them to. Basically if you pass a sink, you drink. Dilute urine, and lots of it, will help keep your body from forming more kidney stones and it will help you pass the ones you’ve already made.”

“They did tell me that, and I feel like I will float away soon.”

“Good. You’re probably drinking enough. You want to keep your urine no darker than a light yellow all the time.”

“I am. It’s a lot of water, but I want this episode behind me as soon as possible.”

“Understood. You’re doing what you can, it seems to me.

“To answer your question about the stent, we need to talk about kidney anatomy. You have two kidneys, one on each side, about a third of the way up your back, right around your lowest ribs. They filter your blood and make urine. They have little tubes called ‘ureters’ that go down to your bladder. The stent goes in the ureter and keeps it open.

“What can happen with a stone is that it can block the ureter. Urine backs up into the kidney, which is not good for the kidney. The stent holds the ureter open so the urine can flow around the stone. Ideally, it helps the stone to pass, but that often doesn’t happen. If it doesn’t, the urologist has to break it up into smaller pieces. The usual way is to use sound waves. They put you under anesthesia because it can be quite painful, as the sound waves cause the stones to move. Right now, our objective is to avoid that, and we do that by having you drink enough water to float away and hope like heck you pass the stone.

“Did they give you a sieve to catch your urine in?”

“They did. They said if they can find out what my stones are made out of, the urologist can give me ideas of how to change my diet to decrease the risk of them. I’m willing to do whatever it takes!”

“Excellent. Did they explain how kidney stones are formed?”

“Nope. They got me feeling better and then sent me out of there, quick as they could. Once they got my pain under control and then off to the operating room for my stent, they pretty much ignored me except to give me pain meds. They were busy and as soon as my observation period after surgery ended, they got me out of there. I think they wanted the bed.”

I’m relieved to hear that Corrine has been given pain meds. I was going to ask about it. When I was a student, our professors confidently told us that kidney stones only hurt if they cause urine to back up into the kidney, and if this wasn’t the case, patients who complained of pain were just whiny or anxious or faking it. My experience, however, was that many of my patients said that their nonobstructive kidney stones hurt. Eventually, this happened enough that I concluded my patients knew more about what did and didn’t hurt than my professors did.

Another thing my professors told me was that kidney stones don’t hurt if they are not moving. I think this is closer to the actual situation, but it is still not accurate, as people with non-mobile stones sometimes say they hurt.

I don’t know if this is still what’s being taught in med schools, but these beliefs are still common. A few years ago, I heard a coworker tell their students that kidney stones only hurt if they block the ureter. With my own students, I tell them they are likely to hear these ideas, but that my experience was that both of these beliefs were bunkum.

What I think underlies these beliefs is that doctors don’t like prescribing pain meds - and they have good reasons not to like to do so - but this dislike can go too far. If they can convince themselves that a medical condition doesn’t hurt, they don’t have to feel bad about not prescribing pain meds.

I don’t share this information with Corinne or any of my other patients because disparaging my profession’s ideas does not lead to confidence - and confidence is a powerful therapeutic.

“I bet you’re right, Corinne. The basic idea is just like in high school chemistry. Your kidneys take whatever is extra in your bloodstream that they don’t want there and dump it into your urine. If there is too much calcium in your blood, they will put that into your urine, and if there is too much phosphate or oxalate in your blood, they will put that into your urine, too.

“If a calcium and a phosphate ion bump into each other or a calcium and an oxalate ion bump into each other, they will stick together. I’m using these as examples because they’re the most common kinds of kidney stones, but there are other things that can cause stones, too. That’s why we need to catch a stone so we can figure out what it is made of. But the way all of the types of kidney stones are formed is basically the same.

“Now, remember in high school chemistry lab how if there was too much of particular ions in solution that they would precipitate out?”

Corinne shrugged, “Barely. High school chemistry was a long time ago and I was so confused about life and myself at that point. I remember more about the kids in class than I do the chemistry in the textbook. I do vaguely remember we mixed stuff together and it would form some kind of powder stuff that would sink to the bottom and we’d pour off the liquid then weigh the stuff and try to melt it and maybe do other stuff to it.”

“Yes, those experiments were the same kind of idea.”

“Who thought I’d be trying to remember my high school chemistry at 61?” Corinne laughed.

“Probably your high school chemistry teacher! It’s funny how foundational that stuff actually was.”

“Haha! Yes, it’s too bad you have to be a teenager when you’re in high school. There’s so much going on emotionally that it’s a wonder we learned anything at all!”

“Ain’t that the truth! So, Mr. Banewicz**** would be proud of me because I can still recite this stuff.

“If two ions of something that can precipitate out meet, they attach to each other. Then if another pair of these things happens to bump into the first one, they line up in crystal formation, and then if a third and fourth and fifth molecule come along, the crystal starts growing. If the dissolved calcium and phosphate, or whatever, get to a certain level in your urine, then they precipitate out. If there’s not much to make crystals out of, you get what we call kidney sand. If there’s more, those crystals grow to the point you get a kidney stone.”

Corinne laughed. “So that’s why everyone is so encouraging about drinking more water - to keep it all diluted so crystals don’t form. It makes sense. So, I’ll drink even more. Actually, I kind of have to pee now that I’m thinking about it.”

“Let me ask you a question before you run across the hall to use the bathroom. Are you going to need additional painkillers?”

“Yes, please! They sent me home with ten of something and told me I could take one or two at a time every four hours. I wondered - haha - if they failed fourth-grade math because ten would not last me even a whole day if I took them like that. So, I only took them at bedtime and then in the middle of the night because not sleeping was the worst. By the way, Doctor Mary, they told me that the stent shouldn’t hurt, but I swear it does.”

“Well, Corinne, that’s what they told me in med school, too. But since then, I have had lots of patients like you tell me they hurt. I also have plenty of patients who say they don’t. I guess in the clinical trial for the stent they got lucky. And, of course, the manufacturer wanted to believe it’s not painful.

“The reason I ask about peeing is because I’m supposed to do a urine drug screen before I prescribe pain meds to you. I know you are not using cocaine or heroin, but I’m supposed to double check. I assume there will only be the pain med in it?”

“And Tylenol and ibuprofen. A lot of that.”

“Okay. The bathroom is across the hall. The cups are in the corner in front of the toilet.” I opened the door and pointed. “Just leave the sample above the toilet.”

When Corinne came back, I handed her the fact sheet about opioids and read her the salient parts of it. Everyone knows that opioids are addictive and can be dangerous, even if you take them exactly as prescribed. A fact I don’t think people remember often enough is that having opioids in your home makes you a crime target. It’s important not to let anyone know you have them. I point out the section about physical effects: constipation, sleepiness, respiratory depression, and eventual withdrawal symptoms.

I write a prescription to get her through to her urology appointment later in the week.

“What other questions do you have?”

“A couple years ago I started taking calcium supplements to help keep my bones strong, but the people in the emergency room told me to stop them because they probably are making me more likely to get a kidney stone. I stopped them, but I’m worried about my bones.”

“Okay. Let’s see. You had a bone density a couple years ago and it was normal.”

“Yes. My mom had osteoporosis and broke her hip and I really want to avoid that so I started taking calcium.”

“Well, I agree with the people in the Emergency Department. There’s a good chance the supplements contributed to your stones. Stopping the supplements may help prevent you from getting more stones.”

“Oh, that’s horrible! But what about my bones?”

“When I graduated from medical school, the recommendations were that all women should take calcium supplements to help prevent fractures. I don’t know when they stopped that, but in 2013, the USPSTF recommended against calcium supplements of up to 1,000mg for postmenopausal women. They said there was not enough evidence that additional calcium would help prevent fractures, and there was evidence that any calcium supplement increased the risk of kidney stones.”

“What changed? First they recommended it for everyone, then they said no?”

“The earliest recommendations may have been made simply because they seemed logical. If your bones are losing calcium, you need more calcium. But since then there’s been more research, and a lot of this kind of research takes a long time. They might give calcium and vitamin D tablets to one group of women and similarly shaped tablets that don’t have calcium and vitamin D to another group. Then they wait for ten years and count up how many fractures each group has. So, even though it would seem that more calcium would be better, the clinical trials eventually showed that it wasn’t.

“Because of the chemistry stuff we were talking about earlier, we were worried that having more calcium would lead to kidney stones. When that got studied, the early results were confusing. Some studies said it did and others said it didn’t. Eventually, they figured out that there was a difference between calcium that was in your food and calcium supplements. Somehow, calcium in your food does not increase your risk of kidney stones, but calcium that comes from supplements does.”

“What? That’s crazy! How does your body know? Is it because it’s absorbed more slowly from food maybe?”

“I have seen a lot of explanations and I think the answer is we don’t really know! Some scientists think it’s because other substances that are in dairy products (the main source of calcium for most people) keep kidney stones from forming. Some people think it has something to do with absorption, as you suggested. There are probably other theories out there, too.”

“Oh, wow! So, that’s why the recommendations change and why they’re kind of tough to understand.”

“Yup. And there’s another complication. We’ve learned that calcium mixed with cholesterol builds up in the arteries and causes vascular disease. It makes sense that keeping calcium levels down would help prevent calcified cholesterol plaques, and there are population studies that are consistent with higher calcium levels being associated with coronary heart disease. I haven’t seen any clinical trials about it yet, but it is plausible.***

“To summarize, we used to think calcium supplementation was good for everyone, to strengthen their bones. Now we don’t think so. We think it’s helpful for women with osteopenia or osteoporosis who do not get enough calcium in their diet. Except for these folks, we’re now concerned that calcium supplementation causes kidney stones, and we think it may accelerate coronary artery disease.”

“Wow! I did not realize I was asking such a complicated question, or that I may have caused my own kidney stone! I sure hope if I stop taking calcium supplements that I never get another one. This has just been so unpleasant. It’s been a real pain in the pass!”

I don’t mention that it was not uncommon to die from complications of kidney stones in the past. Montaigne, one of my literary heroes did.

“Let’s end on a happy note, Corinne. By getting enough calcium in your diet and doing weight-bearing exercises, you can significantly reduce your risk of getting a hip fracture, even with your family history. You can avoid stones and strengthen your bones.”

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*Corinne and every other person mentioned in this esstory is an amalgam and not a real person. Any resemblance to real people is an accident.

**Nothing in this essay is, or should be taken as, medical advice. If you think you have a kidney stone, call your doctor’s office.

***I will preemptively say thank you to the readers who are rushing to the comment section to drop links to the studies I could not find.

**** Not a pseudonym. Mr. Banewicz really was my high school chemistry teacher, and he did a good job!

My assistant brings me a cookie whenever she has to deliver particularly bad or aggravating news to me. Just yesterday she’d brought me a cookie. It heralded an angry voicemail from Lilly, one of my more difficult patients.

My heart sank, wondering what I was about to be told. Then, before getting to my desk, Chloe took a bite of the cookie.

Yay! This cookie is not for me!

“Barbara brought us a big plate of cookies she made today. They’re delicious!

“She walked in and said she wanted to talk with you. I told her you were fully booked this afternoon, and nurse Sharique would talk with her. Sharique just finished talking with her. She says you will want to hear this story yourself. I don’t know anything beyond that. She’s in exam room #3. Do you want to talk with her yourself, or do you want me to try to find out?”

It’s common for patients to show up at the clinic without an appointment, wanting to see me. Exactly how common, I don’t know, because the staff try to solve their problems without disrupting me. The first line of defense is the front desk. If they can’t handle it, they’ll get one of the nurses or medical assistants to help.

Most of these visits are for things like needing help filling out a form or figuring out how to use their new inhaler. If they really need to see a doctor, they’ll be worked into the schedule of someone who is not booked solid, like I almost always am, or they will be sent off to an urgent care center. Seldom do I learn that it even happened, and almost never is there any reason for my involvement.

Sharique had not said I needed to be involved, just that I would want to be. This was intriguing!

“And it’s something she so much wants to tell me that she’s bribing us with a cookie delivery,” I mused to Chloe.

“They’re delicious! Get one before I eat them all!”

My desire to find out has now overcome my desire to stay on schedule. I went to the area behind the front desk, grabbed a cookie, and headed to exam room #3. On my way, I took a bite. Chloe was right. Delicious!

“Thank you for the cookies, Barbara! They’re perfect!”

“I’m glad you like them, Doctor Mary. I made them because Lilly told me Joann wasn’t feeling well and couldn’t make her grandson cookies like he was used to. I love to bake, and figured you’d enjoy some too. I’ll be quick because I know I don’t have an appointment. I hate talking on phones and figured if I brought you cookies, you’d at least be happy even if I made you behind schedule.

“Lilly called me this morning and asked me to come by so I did. She seemed fine, just like she wanted company or something and she asked me a little bit about my life which she’s not really done before. I told her about my sister in California, when I moved out there because she was so sick with the cancer, you remember? Anyway, I told her about how my sister had a nurse that came in and helped out sometimes, like checked her medicine and called the doctor’s office and even sent in a girl to do the washing sometimes. We wondered why Joann couldn’t have that and then we thought maybe Lilly could, too.

“I told Lilly I would come to the clinic to drop off some cookies and that I’d try to talk with you then. After I leave here I’ll drop off cookies at Joann’s for her grandson, then I’ll stop by and tell Lilly what you said.

“What do you think? Could Lilly get a nurse in the house and maybe somebody to help clean a little bit? I can make sure she’s got all the food she needs in the house and sometimes cook her lunch with leftovers for later, and I don’t mind doing the washing up in the kitchen, but I feel weird doing her laundry and really don’t want to do the bathroom or the commode. You know, boundaries!” Barbara laughed.

I doubt that Barbara realized how incredibly ironic this situation was. Lilly was acting like she had thought of the idea of a visiting nurse! Why hadn’t I thought to get her a visiting nurse? I rolled the extra set of eyeballs that I keep hidden in my skull for this very purpose and nodded slowly.

“That’s a great idea, Barbara! I think I can do that. I’ll ask my nurses to work on getting it arranged. I bet we can have them out by the end of the week.”

“I’m so glad to hear that, Doctor Mary. Lilly could really use the help. You know, she’s tough. She was a difficult boss and sometimes she said mean things, like when I saw her in the waiting room and she acted like she thought I was still drinking, but if I needed anything, or any of the other girls did, she would work hard to get it for us. She would also go to bat for us against management or if parents complained about us. I’m glad to be able to help her out a little bit now that she needs it.”

“So, Barbara, what does Lilly think about needing help? Has she mentioned that?”

“She said she doesn’t like it, but she figured out when Joann said she was too sickly to do as much as she used to, that she was going to have to rely on someone besides her and me. You know, she’s got the three kids, but Cassandra is in California, Sean works a lot - and, you know, he’s a man and can’t do a lot of stuff - and Nicole, well, she and Nicole had a fight and Nicole said some mean things and isn’t coming around. Between you and me, I imagine Lilly said some mean things back. I know Nicole, and she’s just like her mom and even when she was in school, they could be like gas and a flame. Don’t mix ‘em unless you’re fireproof!

“She told me she felt real bad about Joann being so sick like, but she didn’t know and soon as Joann told her yesterday, she understood right away and said, ‘well, you better not come around then.’ But then she realized she was stuck, so she called me up and we came up with the answer!”

Well, this was certainly a different slant than I had heard from Lilly’s voicemail yesterday. It seemed Joann and Barbara had delivered very similar messages to Lilly – that there was a limit to how much they were willing to help – and one message led to rupture and one led to a solution. Why the different results? Did Lilly expect more from Joann because they were closer? Did thinking about it for a day cause Lilly to start to come to her senses? I wondered if I’d ever get to hear this story from Joann’s point of view. I wondered how Lilly would remember yesterday’s phone call and if she’d ever mention it to me - that is, if I ever hear from her again. I wondered if Barbara was naive, gullible, or wise to not question the idea that no one had mentioned visiting nurses to Lilly previously.

There were many questions I longed for answers to, but I’ve been doing this long enough to know that waiting for answers to come works better than trying to chase them down.

I walk Barbara back up to the front desk and stop at Sharique’s desk. “I’m already on it,” she tells me, “Like a doctor on a plate of chocolate chip cookies.”

“I don’t get any respect around here!” I whine as I pick up two cookies. To take home, I tell myself. To my family.

Chloe tells me, “Paula is next. She thinks she has a UTI. You saw her for her last UTI seven months ago. She can’t leave a urine yet. I got her some water.”

I looked up at Chloe. There are so many things wrong with this scenario - and Chloe knows it full well.

“All I do is report the situation, Doctor Mary,” Chloe turns on her heel before the sigh has even left my lips.

I remember Paula and her last UTI. I recall that she seemed to enjoy listening to me talk about topics I enjoy talking about. That was something at least.

Maybe I’ll eat one of those cookies while I wait. Besides, I’d like to meditate a bit on what’s going wrong in these stories about Lilly. Instead, I end up meditating on what’s wrong with Paula’s scenario.

The main thing I think is wrong is that having the patient come in and pay a copay and take a slot in my schedule for what they’re pretty sure is a UTI is a waste in most cases. Certainly, if a patient has never had a UTI before or if they have nausea or back pain or if they have a catheter in their bladder, they should come in and be evaluated. But most women who call for a UTI have had a dozen before, all very similar; and if they call early enough that it has not spread further, these can be treated over the phone, in my opinion. Some doctors do not like to prescribe antibiotics without laying eyes on the patient, and some like to be sure that every patient who is willing to come in and pay a copay has the opportunity to do so, but I do not subscribe to either of those enthusiasms.

The other thing that is wrong with the scenario that Chloe sketched is: if you are coming in for an appointment for a UTI, please be able to provide a sample as you walk through the door. If someone has made you come in, the chances that they will want to look at your urine have got to be close to 100%. I suppose if someone felt the urge to urinate was so strong that they might have an incontinence episode on the way to the doctor’s office, they might want to empty their bladder at home. You would think, in this case, however, that there would be some new urine formed by the time they got to the office, but it’s surprising how frequently people come to the office suspecting a UTI and are unable to give a sample. This makes what should be a quick visit drag on.

I take a glance at Paula’s chart. She is 43 years old, has three children, no surgeries, takes no medications, and has a UTI every couple years.

My employer will be glad for her copay and her insurance’s reimbursement for the visit. Even I’m sort of glad, because my little talk with Barbara has put me behind schedule. An extra-short visit, like the one I’m expecting now with Paula, will get me back on schedule. But, for her sake, I hope she didn’t have to take time off from work for this waste of a doctor’s appointment. I would have sent an antibiotic in for her without an appointment had the nurses asked me.

I look over my desktop and address a few urgent messages from the nurse. As a coincidence, one of my patients has phoned in to request antibiotics for a UTI. This is her fourth one in twelve months. Now, this is a patient who should come in to be seen. I will want to go over the reasons she might be getting UTIs so frequently. Maybe there is something we can do to fix it. I may also want to talk with her about methods to prevent future UTIs or even send her to a urologist to make sure there’s nothing anatomic going on to predispose her to UTIs. I send a message back to the nurse to call the patient to make an appointment, and I explain my reasoning.

I head in to see Paula. My plan is to do the entire visit, including documentation, while her body is making urine. Then, she’ll leave a sample and Chloe will process it and all I’ll have to do is acknowledge the results and send the prescription before I close the note as finished. At least that’s the plan.

“Hi! It’s me again! Same problem. I haven’t had one of these since the last time I saw you, at least. I used all the advice you gave me to keep from getting another one about how the bacteria comes from my anus and wiping front to back and stuff. And it worked! Well…. Until now.

“I’m sorry I couldn’t give you a sample. I had to go so bad before I left home so I peed and I thought for sure I’d have more by the time I got here, but now my kidneys are being all shy!”

“It’s okay, Paula. These things happen. How long has this been going on?”

Paula outlined a standard UTI course and I launched into an abbreviated version of the standard response. Paula and I had been through this before.

“Let me ask you the questions to make sure nothing else is going on. No fevers, no abdominal surgeries, no nausea, no back pain, just the urine symptoms?”

“Yep. That’s right.

“Hey! I have a question! Why do you always ask about back pain? My bladder is nowhere near my back. The nurse on the phone asked me, too.”

This appointment was no longer going to be quick, but I do love talking about anatomy.

“The symptoms you are describing are because there is bacteria in your bladder. That is a nuisance, but if the infection just stopped there, it wouldn’t really be dangerous. However, your bladder is attached to your kidneys, and if the infection gets to them, that can be life-threatening. People with kidney infections can get really sick, really fast, and kidney infections can make you so sick that you wouldn’t even be able keep the antibiotics in your stomach long enough to absorb them and let them get to your kidneys or bladder.

“Let me draw you a picture of your urinary system. Once the bacteria get from your anus to the urethral opening, it still has a bit of a journey before it gets to the bladder. It has to go up about an inch of urethra. Every time you pee, you wash out any bacteria that have managed to make the arduous journey partway up the urethra.”

“Oh, my gosh! That’s why they say to pee after sex!”

“Yep. Any bacteria that have been pushed around and gotten the chance to get near your urethra get foiled by that. Even the bacteria that make it all the way up your urethra and into the bladder can get washed out when you empty your bladder. The only hope for the bacteria is that a tiny bit of them don’t get washed out and they find a corner of the bladder to hide in. A bladder with an outpouching or that has had its shape changed by injury, endometriosis, or surgery is thus predisposed to infection.

“Filling and then emptying the bladder fully increases the chances that bacteria can find no place to hide. This is where UTIs become a problem for older men. When their prostate keeps their bladder from completely emptying, bacteria sit around inside the bladder and multiply. This increases the chances that some will multiply enough to cause problems.

“Urine flows from the kidneys to the bladder via the ureters. These are narrow tubes that have frequent outflow from the kidneys. Also, they contract frequently to push the urine towards the bladder. So, they’re not a good place for bacteria to set up shop. But, if the bacteria manage to move through the ureters into the kidneys, they have arrived at a place where they can multiply like crazy. A sign that this has happened is back pain or a fever. If a patient with a UTI has those symptoms, we want to take a good look at them. If they seem really sick, we send them straight to the Emergency Department to be put on IV antibiotics.

“That was a long-winded answer to your question, Paula.”

“Thank you. It was really interesting! When I was younger, my body just did stuff and I never really noticed it, but now that I’m getting older, I notice it doesn’t always do what I expect and it’s helpful to have some idea of what’s going on. Otherwise, I’m just guessing, making up stuff, and reading on the internet. Haha!

“Kind of like my kids if I don’t talk to them. You know what one of the most crazy things in the world is? I’m starting to go through menopause and my kids are starting to go through puberty. It’s going to be hormone hell in my house!”

“I’ve noticed that before, too, Paula. It’s funny how human life often works out that way.

“Think you can pee now? We don’t need a lot.”

“I feel really stupid, but I don’t think I can yet. I chugged that whole bottle of water, too.”

“I’ll have Chloe get you another bottle. I’ll say goodbye here. Unless there’s a surprise in your urine, I’ll let Chloe give you your results and call in an antibiotic, okay?”

“Okay! It was nice to chat again.”

I asked Chloe to get her more water and sat down to do paperwork on my computer. As I sat there, it occurred to me that how I handled this appointment didn’t make sense. Had the patient phoned or emailed in her concern, I would have prescribed an antibiotic without seeing her or her urine. But, since she had come in, I was insisting on getting a urine before I would give her a prescription. And because I had asked questions in the exam and actually seen her, I already had more information than I would have had if I had just prescribed over the phone. Yet, here I was, insisting on having even more information. And why? Because that’s the way we do UTI appointments.

My thoughts returned to what happened yesterday. Was Lilly like the triage desk getting a different answer depending on which doctor they asked? Did we get different responses from Lilly to what seemed like the same input because she asked a different part of her psyche, a different internal worker, each time? Was I trying to draw similarities between two things that were too different?

Then the relentless rhythm of primary care interrupted. Chloe tells me my next patient is ready.

Eventually, Paula would provide a sample. Chloe would see to it. After that, in all likelihood, I’d give Paula the same prescription she would have gotten had she just phoned us.

In theory, medicine runs on science. In practice, it runs on people, timing, delivery, personality, and a million other unknown factors.

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*All of the patients in this story are patient amalgams. Any resemblance to a real patient is purely accidental.

**Nothing in this essay is or should be construed as medical advice. If you want that, please see your doctor.

The video bonus

Every April we have a volunteer event to pick up litter along this road. Here in southern New Hampshire, April is the perfect time of year to do this. The snow has melted, the ground has thawed, the spring mud has receded, but it’s still too cold for anything but the very first green shoots of spring, and usually too cold for the bugs - bugs that will soon make being outdoors an intensely unpleasant experience for several weeks.

Even though this is a lightly traveled two-lane highway going through a rural area, there’s an amazing amount of litter to pick up. We set out in two-person teams to do our work. I get paired up with Debbie, whom I’d not seen since the neighborhood association’s picnic last year. While we pluck litter out of the drainage ditches and woods lining the road, we catch up on each other’s news.

By far the most common piece of litter is beer cans, and what we find in the ditches is not at all a representative sample of what’s sold in the stores. It’s just a few brands, and often ones that aren’t particularly popular. I’ve been doing this litter pickup for several years. It’s always like this.

In New Hampshire, having an open alcohol container in your car is illegal. People who drink and drive are thus highly motivated to toss their empty alcohol containers out of their car windows. On top of that, people who are trying to hide their drinking problems from their families are motivated to drink unseen - and one of the few times a day they can do that can be during their commutes. As beer drinkers tend to be brand loyal, the fact that a small number of problem drinkers come through here regularly can be inferred from the large number of cans and small number of brands. These cans are a symptom of a much deeper problem than mere disregard for the environment, and they are a good reminder that well-intentioned things can have unintended consequences.

After we catch up on each other’s news, Debbie says, “My mother-in-law just got diagnosed with shingles. Would you mind if I asked some questions?”

It seems that in any conversation that’s sufficiently long, I always end up getting asked for some medical advice. I am sure this happens to people in every profession that sells expertise, but I suspect it’s most intense for doctors. Almost everyone has medical questions for themselves or their loved ones. Not everyone has legal problems, roofing problems, or car problems - at least not nearly so often.

“Not at all, Debbie. What are you wondering about?”

It’s true that I don’t mind, particularly under these circumstances where I’m going to be out here anyway. Speculating on the number of alcoholics driving through every day only carries a conversation so far.

The only time I mind this sort of thing is when the person wants me to help them second-guess themselves about a decision they’ve already made. For example, no amount of medical school will let me know if a person had talked with their brother about his drinking two months earlier, he’d still be alive. In these cases, the person asking the question isn’t looking for medical knowledge; they want reassurance from someone they consider an expert. They want absolution. While I can provide medical knowledge, I can’t provide reassurance about hypotheticals in cases about which I’m not intimately familiar.

“Well, first off, is shingles just chickenpox? But for old people?”

“Yeah, sort of. You know how, when we were kids, everyone just got the chickenpox at some point? Well, after you get the chickenpox, your body doesn’t get completely rid of the virus. It just goes into hiding in the nerves at the boundary between your central and peripheral nervous system. When your immune defenses are down, it tries to poke out. Usually, your immune system beats it back until finally, one time when your immune system is busy doing something else or otherwise weakened, it attacks.

“It travels along the route of the nerve, making the nerve feel funny. ‘Itchy’ or ‘burning’ or ‘tingly’ are the words people usually use to describe the feeling. It almost always goes along the nerves associated with one single level of the spinal cord or one single nerve on your face, and on only one side of your body. Much less commonly, it can go along two or more nerves that are right next to each other. Very rarely, if you are exceptionally unfortunate, it can affect your whole body.

“Eventually, the virus reaches the end of the nerve. There it turns into a rash which is characteristically described as looking like ‘dewdrops on a rose petal.’ The dewdrops under the skin are quite fragile. Breaking them releases a drop or two of fluid filled with live chickenpox virus. Usually the fluid is clear, but it can sometimes be yellow, gray, or bloody. These sores will sometimes weep fluid for a few days, but sooner or later they crust over, form scabs, and heal.

“Since chickenpox results in lifelong immunity, shingles is a good trick the virus has for infecting younger generations who have not been exposed to the virus.

“The virus, or perhaps the body’s inflammatory response to the virus, kills the nerve fiber that the virus has traveled along. This is painful. Usually, this pain lasts less than three months, but for some people, for reasons we don’t understand, the pain can last much longer. As terrible as the initial rash is, the pain is much worse.”

“Yes, that’s what I hear,” Debbie says.

“There is a treatment that helps if taken early enough. The earlier the better, but at least within 72 hours of the rash starting.”

“Thanks! That leads me to my next question. So, Milly called her doctor on Thursday with back pain. They got her in on the next day and referred her to an orthopedist. The orthopedist was super accommodating and got her into a Saturday walk-in clinic. There, he discovered the shingles rash. He said he didn’t know what to do for shingles and suggested she could go to the emergency department. She has a $500 copay, so she didn’t want to go. She called her primary doctor’s office, which was closed for the weekend. Their answering service said the options were to go to the ED or to leave a message for the office for Monday. She left a message, but the following day she realized that going to urgent care was only a $150 copay. So, she went there and they gave her anti-viral pills.”

“Oh, it’s common for the pain to start before the rash appears. So, when she went to her primary care doctor, there may well have been nothing to see. In fact, the wife of one of my med school classmates had chest pain and was even admitted to the hospital for a rule-out-heart-attack type admission that turned out to be shingles. The rash developed on the second day.”

“Oh, that wasn’t my question. Her primary care doctor didn’t actually look at her back, so they definitely wouldn’t have seen the rash.”

“They didn’t look at her back?”

I try not to be judgmental of other doctors’ work. I wasn’t there. I don’t know what happened. I am far from perfect myself. I hope others give me the grace that I give them. But, in this case, something about how I said it betrayed my reflexive judgment of the situation: I was flabbergasted that the doctor didn’t even look.

“Isn’t that incredible? The orthopedic doctor tried to be nonjudgmental about it, just like you, but Milly said she could tell he was shocked by it, too.”

I thought it best to change the subject.

“It seems quite reasonable to me that the ortho didn’t want to treat shingles. It’s totally out of his wheelhouse.”

“Golly! I agree,” Debbie said, “He treats bones and muscles and joints, for heaven’s sake, not viruses!”

“The 72-hour timeframe on the treatment is not a hard-and-fast rule. If you don’t know when the rash started for sure, or if the patient keeps getting new lesions, it seems very reasonable to start the medication even if it might be after 72 hours. It doesn’t have a lot in the way of side effects and is pretty cheap.”

“That was what I thought, too. We knew the rash was there on Friday, and I think it’s fair to say it wasn’t oozing on Thursday or Milly would have noticed, but we can’t say anything more than that. My question, however, is not any of these things.”

“I keep trying to anticipate your question, answer it before you can ask it, and I keep not getting it, hunh? It’s like I keep going off into the weeds.” As I say this, I am literally off in the weeds trying to retrieve a beer can that’s unusually far from the road.

“That’s no big deal. We’re just trash-talking,” she laughed.

“My question was: would you take on my mother-in-law as a patient? She doesn’t have a lot going on medically, but she has completely lost confidence in her doctor and I can’t say that I blame her.”

Over much of my career, I would have said yes to this request. Now it makes me uncomfortable. My patient panel is already too big, and as I get closer to retirement, I’m trying to trim it down. We have perfectly competent younger doctors in our practice who don’t have enough patients because they haven’t been practicing long enough to have the word of mouth that I do. I get entirely why Debbie would want her mother-in-law to get a new doctor, but I don’t want more patients. On the other hand, I’m sure I would enjoy being her doctor because Debbie and her husband are both lovely people.

Debbie notices my hesitation.

“You don’t have to answer now, but please think about it. I wonder, though. What did you mean by the immune system being weak?”

“Well, we don’t really know why the immune system is able to contain the chickenpox virus at one point and then not at another. Sometimes, it’s obvious, like the person is getting chemotherapy or their spouse has just died or they’re very stressed about something else, but often it’s just because they’re getting older.”

“I’m not really sure about what’s going on with Milly. Maybe she’s more stressed. I don’t know. She keeps her worries to herself. She seems perfectly healthy. It’s probably just the getting-old thing.” She shrugs. “And, can I ask you some questions about the shingles vaccine?”

“Sure. What would you like to know?” I’m relieved the topic has been changed back to straightforward medical issues. I was afraid that one of those questions involving second-guessing might be coming up.

“So, the shingles vaccine is different from the chickenpox vaccine my kids got when they were little?”

I nod, but don’t say anything more. I’m determined not to restart my streak of anticipating the wrong question.

“My mom says I didn’t have the chickenpox when I was little, and as my kids were vaccinated, they never got it either. But, here’s the thing: I read recently that the shingles vaccine protects against dementia. So, I’d like to get it and I’m not sure what to do.”

I pause for a moment, wondering what the real question is here. Is it about not having had chickenpox? Is it about dementia? Or is it just about logistics? I pick the first one.

“If you’ve never had chickenpox, you need to stay away from your mother-in-law. She’s contagious, and she’ll stay that way until the rash is fully scabbed over. However, most people born before 1980, like you and me, Debbie, haha, have been exposed to the chickenpox virus, even if they never had noticeable symptoms. It is easy enough to do a blood test and find out if you have antibodies to chickenpox. I’ve had maybe a dozen patients over the years whose parents think they’ve not had chickenpox, and when we check their blood, they have the antibodies. We figure they must have had a very mild case.

“This used to be a big issue with the old shingles vaccine. Because it was a weakened live virus, it was important that the person had had chickenpox before you gave it. If not, the vaccine could give them a case of chickenpox.

“The old shingles vaccine - Zostavax - was used from 2006 to around 2020. The shingles vaccine people get now - Shingrix - uses only a single virus protein, so, you can’t get chickenpox from it. However, if you’ve never had chickenpox, you should talk with your doctor about getting the blood test. Then you can talk with them about your next step.

“I’ve never seen chickenpox in an adult, but the teaching is that the symptoms are more severe and the risk of complications is worse. That would match my observation of other childhood diseases. Kids have a much milder time of them, and when adults get them, they can be miserable.”

“Oh, I definitely don’t want chickenpox! I’ll ask my primary care about the blood test. But if I get the chickenpox vaccine, does that prevent shingles, too? The chickenpox vaccine has weakened chickenpox virus in it, right?”

“Yes, the chickenpox vaccine has live virus in it. The chickenpox vaccine is not 100% effective. You could still get chickenpox. If you do, it will be a mild case, maybe even so mild you won’t notice it’s chickenpox.

Although we don’t know for sure, the weakened virus in the chickenpox vaccine may be enough of an infection that one can later get shingles. To be on the safe side, you should get the shingles vaccine. However, as to the timing of the two vaccines, I have no idea! There aren’t many adults who have never had chickenpox or the chickenpox vaccine.”

“But it’s okay for me to get the shingles vaccine, right? I mean, not right now, but as soon as my doctor thinks I should. The reason I’m asking is that I saw on the internet that the shingles vaccine decreases your risk of dementia. While I can still remember what the things are that decrease my dementia risk, I want to do them all.”

“I saw that too. Things like that get hyped a lot on the internet. They make readers think that the vaccine has been shown to reduce the chances of dementia, but the truth is that all they found was a correlation between not having shingles and not having dementia. Those aren’t the same thing. It might be that getting shingles increases your risk of dementia. It might be something else. But whatever it is, telling the story this way is not only a good way to get clicks, it’s a good way to sell vaccines. That’s how these stories get out there. What gets told is what gets sold.

“I researched this further and found an interesting factoid that has not been widely reported. It also turns out that having shingles and getting the antiviral treatment like Milly just got is also associated with a lower chance of dementia than having shingles and not getting treated.”

“Oh, that is interesting, isn’t it? It makes sense that a shingles outbreak could cause dementia. The virus lives in the nerves, and, like you said, it kills nerves.”

“Yes, but the virus lives in peripheral nerves. Thinking goes on in your brain - or so we think. That’s in your central nervous system, not peripheral. There may be something else going on, but the connection is not obvious.”

I was about to begin speculating on how much of our thinking might really go on in the peripheral nervous system when a car kindly slowed down to go by us - unlike many that just wizzed by us going over the speed limit. As they got closer, they rolled down the window. “Hi Doctor Mary!” It was one of my patients. Random encounters with patients happen all the time with us small-town docs. It wouldn’t surprise me if some of these beer cans I’m picking up were put here by one of my patients. I have several of them with some form of drinking problem.

After we finished the section of road we’d been assigned, we took our bags of trash back to the staging area. As Debbie and I said goodbye, she said, “I’m so glad we were partners for the road clean-up. I’ll do my homework with my primary care doctor. But please think about whether you can take on my mother-in-law as your patient and get back with me on it.”

As is well-known, the incentive structures in medicine are a mess. The more patients a doctor sees, the more money they make. If you can save a minute by not actually looking at the back of someone reporting back pain, and instead efficiently send them off to an orthopedist, that’s a minute more you can use to see another patient or to answer an urgent question that has piled up on your desk. This happens all the time. Just a year ago, I watched it happen to my husband.

I appreciate that people want me to be their doctor, but I’m at the stage of my career where this has become a burden rather than a boon. I am getting near retirement. It makes questionable sense for Milly to switch to me for only a few years. Besides, my existing patients already have trouble enough booking appointments with me. I suppose I should just say no to Debbie and suggest one of my younger colleagues instead.

I wish there were a vaccine I could give the incurious physician who saw Debbie’s mother-in-law, so that their desire to find out what was causing her back pain outweighed their desire to move her visit note to the done column.

I also wish there were some vaccine we could give these problem drinkers who have poxed our road with beer cans. While their behavior is, in a sense, rational, it’s hiding a problem that’s likely to break out someday and be very painful.

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*I did recently pick up trash on a highway with a neighbor, but Debbie is a neighbor amalgam.

**Nothing in this essay is intended to be, or should be construed as, medical advice. If you would like that, please see your physician.