Ep 5. Doctoring Above & Beyond

Justine: 0:00

When I go to the doctor, I don't really expect more than whatever they're there to do. I also truly feel like she's saved my life.

Heather Johnston: 0:12

This is doctor patient, a podcast that examines all the aspects of the patient provider relationship. I'm your host, Heather Johnston, MD, a doctor, but also like everyone else, a patient. Doctors are typically pretty overworked and have very little free time during their day. That's why the stories you'll hear today are even more endearing and meaningful. We'll hear about doctors that went above and beyond the expectation of care. Justine from New York has had two incredible and lucky encounters with doctors over the years. Earlier in her life, she was living in Chicago.

Justine: 0:55

I was in my third year of law school. And I had, you know, scheduled somewhat absentmindedly just a regular OB checkup appointment. And it was squarely in the middle of my finals. And it was a new doctor. And I spent a whole lot of time trying to get the appointment when it was scheduled months prior. And I couldn't change it. And the minute I walked into her office, and again, I've never met this doctor before. She said, What's that on your neck? And I said, I you know, it's my collarbone, I guess I mean, and she said, You know what, you're the perfect age for Hodgkin's. And I need you to get that checked out.

Heather Johnston: 1:45

Okay, I have to say here, remember, she's seeing a gynecologist, I'm not going to get graphic or anything. But I do want to point out that her doctor is commenting on a part of the body that she's not usually responsible for.

Justine: 1:58

And I said, Oh, okay, you know, I need to focus on my finals. And you know, that's it. And so anyway, she did the rest of the exam. And I went right back to the library after. And this was, you know, the time when you actually called your messages, you know, in your answering machine at home. Which, yes, I'm dating myself clearly. And that evening, when I called to check my messages, there was a message from this doctor, saying, I made an appointment for you tomorrow, with, you know, an ENT and gave me the information. And she said, you have to you have to go. The fact that she acted in that way and made the effort to make the appointment and everything else just made me realize, you know, this, this is something that that is serious and timely. And you can't just wait until after finals or whatever it was. I mean, that was the only thing I could think about in that moment. I also truly feel like she saved my life.

Heather Johnston: 3:07

As it turns out, Justine was diagnosed with Hodgkin's lymphoma, which is a type of blood cancer. She was in stage three out of four at the time that she presented, meaning if it had gone for too much longer, she really could have been in trouble. Justine, do you feel like that changed your relationship with other doctors that you see?

Justine: 3:27

I do, because I think I'm, I'm the kind of person that doesn't generally expect people to treat me like I'm special you know. And so, when I go to the doctor, I don't really expect more than whatever they're there to do. I think it changed how I, it changed in terms of what I expected, or what I wanted to expect from doctors.

Heather Johnston: 4:01

Let's talk about expectations for a minute. Justine was pleasantly surprised because she didn't expect her doctor to go so far in their efforts. So I'd like to ask what do we expect from our doctors? I've had different patients feel both happy with me or frustrated with me for doing the exact same thing for both of them. And I guess each of us have to think about this for ourselves. Personally, I don't think it's too much to expect focused care, communication, trust, access, respect, empathy, and a good listener. Also, I like hugs, but if I get one of those, it's just gravy. My husband when I asked him what he expected, said three things - a hands on physical exam. Obviously I've taught him well. Second, he said asked me something about my personal life don't only engage in the physical part, and third was return my calls. Getting back to Justine, she had another exceptional experience while living in New York and pregnant

Justine: 4:59

I got pregnant and was due in March 2020, which is now you know, laughable. And this doctor that I had been seeing for 20 years, was taking a different position in the hospital and told me that she could no longer see me. And that she also wouldn't be able to deliver the baby.

Heather Johnston: 5:27

Okay, this is already a tough blow to not have the doctor that you spent years building a relationship with be leaving at just that time. But on top of it, we're talking March 2020, the early stage of the pandemic.

Justine: 5:40

We had the date scheduled, and it unfortunately, fell on the week that New York hospitals banned anyone from the hospital. My mom and my sister who are both in Chicago are supposed to come to New York, you know that, of course, they couldn't come for the birth, which is just heartbreaking. And you know, of course, I wanted my mom to be here. Not only for that, but you know, she was going to help us for a couple of weeks. And

Heather Johnston: 6:14

Justine found another doctor to take over and really liked her. But then,

Justine: 6:19

because of COVID, the hospital was only having doctors deliver on certain days. And so she wasn't going to be there the day that I was going to have the baby, I thought, Okay, well, I think I can manage that. And then, you know, she called and said, I think they're coming up with a policy that you're actually going to have to be there by yourself. She said, you know, look, this is really, really rotten, and I am so sorry. And I am not supposed to be there on Thursday, but I am 100% not gonna let you be in a room full of strangers, when you bring your baby into this world. That is totally unacceptable and I will do whatever I need to do in order to be there. And she was there. And it was, it was a roomful of strangers. And of course, not having my husband there was really sad and devastating and something that I'll never sort of get over in a way, but the fact that she was there, and what meant the world to me.

Heather Johnston: 7:35

So Justine gets through the doctor switch and comes to terms best she can with the news that none of her family, including her husband can be at the delivery of her first child, and then zoom.

Justine: 7:48

We were sitting there trying to set up the zoom with my husband at home, I had never done a zoom call, it wasn't exactly sure what it was, which seems preposterous now, but they had also never done one in the delivery room. So she, you know, so we were all kind of scrambling and they wound up they had an iPad, but it was, you know, one of those IV rolly carts sort of. So they were able to set it up on that, and just pulled it, you know, so that was right next to me. And, and I will say I mean I'm hesitant to say this because of course, nothing would match having my husband there in the room with me. But, there was something incredibly comforting about seeing my living room while I was in surgery. So maybe not for childbirth. But you know, if for other surgeries if you're awake or something I don't know, there was something really nice about seeing my husband in my in my living room because you know, the hospital room itself is so sterile and

Heather Johnston: 9:04

Everything ended well for Justine in the delivery room. And she got very familiar with zoom over the last couple of years. My next guest is Bonnie from Maryland. She tells her story of getting diagnosed with an incredibly rare disease and about the doctor that stuck with her

Bonnie: 9:21

Probably about seven or eight years ago, I started through it all. noticing that I was really short of breath and I have a really vivid it's one of those memories that was really ingrained in my head because I was walking around a lake with a girlfriend. And it was a pretty flat area right obviously around the lake. And I'm thinking wow, I am like really out of shape what the heck is going on with me? And so that started me on this journey of trying to talk to various doctors and figure out what was going on. Because I quickly realized this It's not just me needing to up my exercise or do it more, do more every day. This there's something else going on. So, you know, I went through the whole gamut though. I went to a general practitioner, who then sent me to pulmonology, the pulmonologist went through an entire rundown of all the normal pulmonary function tests, including like X rays and CT scans and putting you into one of those pulmonary boxes where you're breathing through the tube. He found nothing. I mean, the good news was I was he felt like my lungs were actually in really good shape. So then he sent me to an allergist who said I was fine there. Pulmonologist then sent me to a cardiologist who sent me through the normal cardiology things, echocardiogram, you know, stressed test, I even went through a right heart catheterization. The good news is my heart was in really good shape. So then pulmonology sent me to a rheumatologist, which rheumatology, I guess is, you know, one of those doctors that when you can't figure out what's going on, maybe it's autoimmune. So he did a complete workup on me and, and again, good news again. I'm fine, right? And so the wonderful news was, I was perfectly healthy in every test. The bad news is no one can figure out what's going on. And as you probably realize, anytime you're seeing a specialist, it takes several months to get in, and then there's follow up. And then there's tests. And so literally, this took years to get through all of these different doctors. And still, no one can figure out what's going on. At one point, I know one of the doctors said something to me about asked me if I was stressed. Well, I mean, you and I've talked about this, I'm a working mom of three kids, one of whom has a chronic illness. Yes. Is every working mom stressed? And oh, by the way, I still can't breathe, right. So I'm still really short of breath at this point. And at this point, it's getting to the point where I'm literally mindful of every step I take. And I walked slowly everywhere, I cannot can no longer walk up a flight of steps. And when I say I can't walk up a flight of steps, it's not just a, it's not just a little bit out of breath at the top, I literally have to stop at the top of the steps and and stand there for a few minutes.

Heather Johnston: 12:22

How much time had passed between when you first noticed it and what you're describing now, after some appointments, how much time was that?

Bonnie: 12:30

Probably about three years, three and a half years. You know, making the bed impossible. Vacuuming not happening, right? Like regular household chores, walking down to get the mail, we live kind of in the country a little bit. So we've got a long driveway. I cannot, I can no longer walk to go get the mail. I am just constantly wheezing, constantly coughing, and all that's just really making me exhausted.

Heather Johnston: 12:56

Finally, Bonnie season ENT, an ear, nose and throat doctor and has a scan of her upper airway. She's waiting to hear the results when she wakes up in the middle of the night, almost completely unable to breathe. Her husband takes her to the emergency room. And there she finally gets a diagnosis.

Bonnie: 13:13

I walk in, I didn't even sit down I was immediately taken to a room and within an hour. They were like you're not leaving, you actually have what's called idiopathic subglottic stenosis, you need to have emergency surgery. And they were kind of laughing at me because I was almost giddy. They're like we just told you you have emergency surgery, and you have a life threatening condition. Why are you smiling? Like because yeah, finally I have an answer. I finally after years and years, for unknown reasons, I had actually scar tissue that was building up in my airway. And that's why I couldn't breathe. A normal woman, my understanding is that a normal woman has about a 15 millimeter airway. And I was about 90% closed. So mine was about, you know, what is that one? 10% open, about 1 mm.

Heather Johnston: 14:08

Wow. It's amazing you were able to walk around in your day and function. I mean, you weren't absolutely functioning as you're describing. But at the same time, were you working and being a mom and doing all those other things with 90 percent of your airway blocked?

Bonnie: 14:23

Yes. Yep.

Heather Johnston: 14:24

Wow. Bonnie, was there one doctor through the whole thing that was sort of coordinating the different appointments and specialists or no?

Bonnie: 14:33

Probably more me, but that one pulmonologists that I was going to, he was he tried so hard to help me figure out what was going on and he was just stumped. Because this is a very rare condition. So I would go back to him and I would say okay, this is you know, this is what cardiology said what do I do now? This is what the allergist said, what do I do now? And he kept trying to figure out out where I should go next. He was like, I know it's not me, but come back to me and I'll help you figure out what we should go where you should go next.

Heather Johnston: 15:07

That alone is also pretty uncommon. Usually if it's if it's not you you're you're passing, passing the baton really to the next person.

Bonnie: 15:16

Yes, yes.

Heather Johnston: 15:17

And how about your internist? You mentioned at the beginning of the story that that was the first person you called and did that person stay involved or no?

Bonnie: 15:27

So not in the day to day things, no. I mean, I would just, you know, when I do my annual physical, I would just say, Yeah, I'm still looking into it. Yeah, I'm still not feeling well. The interesting thing is, I mean, she's probably my internist is probably getting close to retirement. But she's said to me after my surgery, she said, I just looked at the surgical notes. I've never heard of this, teach me about it. And she said, In all my 40 years of medical experience, I don't have a single patient with this. And she said talk to me about and so to her credit, she's, you know, she isn't she's a generalist, right, like she's not supposed to be experienced in these weird, unusual, rare conditions. And to her credit, she really wanted to learn and listen. And and she was like, I don't know that I'll see another one before I retire. But if she does, she now has some experience and understanding of what I went through.

Heather Johnston: 16:22

That's a good sign circling back nd trying to understand it.

Bonnie: 16:25

Oh, definitely.

Heather Johnston: 16:26

In an earlier conversation that we have you don't blame anyone from early on? Because it's hard to know everything about the human body. Can you talk about that a little bit?

Bonnie: 16:37

Yeah, I mean, I think in the beginning, it was hard for anybody to hear. I could sense it and I could feel it. But it wasn't something necessarily super measurable. And so I think that's part part of what was going on wasn't for a long time, it was just me saying it. And even I think my friends and family were like, thinking in their heads, well just exercise a little more, maybe won't be out of breath. But it's also a rare condition. And the body is incredibly complex. And I, I know at one point, I was told how many bazillions of rare conditions exist in the world, there's a lot of them. And so how can anyone really understand and know the million in one ways things can go? A little bit off track on your body? So I don't I don't blame anybody. And I really appreciate, you know, the general practitioner. And actually, the pulmonologist called me after he got a report of my surgery. And he was so excited that I had finally gotten an answer. And he had never heard of this either. And he had, he was like, I just want to let you know, I did my research. That way, if another pulmonology patient comes in, and I can't figure this out, I will you know, I know what to do next time. So I really appreciated that about about all of these doctors being willing to learn and continue their education with what was going on.

Heather Johnston: 18:08

Yeah, it sounds like you were really lucky to have a relationship with somebody who was willing to say, I don't know, and say it's not my problem, for lack of a better term, but I'm going to stick with you.

Bonnie: 18:22

Right

Heather Johnston: 18:22

And I'm going to follow up and learn myself about it. You're really lucky to have someone like that. I mean, what would someone do who doesn't have an in with somebody, you know, we're someone that they feel comfortable calling about? How do you manage knowing that there's something wrong with you, realizing that people have tried button have now given up, to figure it out? You know, what are the steps to take?

Bonnie: 18:48

I think if you were if you're at a doctor who's not taking you seriously, move on to you know, find another one. Look, I ask around for for your friends or for other doctors to recommend a good whoever pulmonologist, cardiologist, right? Who would you go to, Doctor, if this was your wife or your husband or your child? Who would you send me to right? And they they know more than anybody else I think who the good ones are.

Heather Johnston: 19:16

I think that's always a great question to ask, actually. I've asked that question many times. If this was your wife, who would you ever see? Or your husband? Who would you have him see? I love that question of doctors. People have asked me that. I used to be a pediatrician, a practicing pediatrician. Who would you see now that my kid is older and needs an adult coctor; who would you send your kids to? And that's it is valuable, you know who you're around. But it really it what really struck me about your story and what got me thinking, you know, in my head and about my life and about listeners lives is it really comes down to the relationship. Because if you have somebody that you feel, first of all that you can pick up the phone and call, lots of people don't feel comfortable doing that. Secondly, if you have someone who knows you, so they understand that you're not histrionic or faking it, or a complainer. And thirdly, someone who will do the work of follow up. And the question is, how do you get that kind of relationship with somebody? Do you feel like you have that with your internist?

Bonnie: 20:27

Probably at this point, I mean, I've been going to her for about 10 years or so. And so I think anytime you can find a doctor that is good, who you can relate to, stick with them, right? Don't jump, sometimes I think we choose convenience over relationship, because we're all busy. Or we all have too much to do. And so I'd rather go to another doctor in the same practice, who has a better time for me this year and not worry about seeing my person. Well, that's more convenient for me, but then it's not the same person seeing me year after

Heather Johnston: 21:05

That's a great point. And it really illustrates year. that the responsibility to keep that relationship up is on both sides. I think a lot of people don't have, you know, have access problems like they can't get in. And on one hand, it's the doctors job to make themselves available to their patients in timely ways. But it is, yeah, there's a little relation, there's a little responsibility on the patient end to stick with somebody that's made that effort for you.

Bonnie: 21:38

Yeah, I would agree. And I would also say, you know, I think the doctors, the pulmonologist, for example. He didn't know me until I walked in the door that one day, but I came to him prepared, right. And so I find that a lot of my friends when they go to the doctor, and I've watched now that my, I have two boys that are about to turn 20, I have twins that are about to turn 20. And so now they've reached that magical 18 year old threshold, and they're supposed to be going to the doctors on their own. And they don't know how to communicate, right? And so, if you just sit there and say I'm short of breath, that means a whole range of things to people, right? And so describing I am short of breath and what I mean by that is - I can't go up a flight of steps I do you know, like giving examples and telling it's all the time. It's not just when I'm having a rough day, it's not just after I've eaten a big meal, right. Like, being really specific I think in the communication. I think I mean, you tell me from a doctor's perspective, I think that helps you guys as doctors to get a vision of what I'm saying. And therefore it's you can sit there and say okay, well then click off check off. That's not mental health. That's not, you know, reflux, that's not whatever, right? That's something else that's going on. And I think knowing your body, being very specific with what you're saying. I also started to write stuff down because years went went by and I started to lose track in my head of which tests did I just do? Right, what did the other doctor do? What was the bloodwork that was run? And so I literally just kept a folder that I brought with me everywhere that had my my CD of my CT scan, my results from my blood work, my pieces of paper of what the what the various doctors did, so that we weren't starting over from scratch, either. So I could sit down with the doctor, the new doctor, the rheumatologist or the or the allergist, or whoever I was saying, this is what we've done. This is what's come of this now, where do we go from here? So I think there's some advocating that you have to do for

Heather Johnston: 23:44

I agree with that, I think that's great. I've yourself. actually had a ton of health problems myself. And just a couple of years ago, I actually just wrote on a Word document, my own past medical history, so I could just list everything in one place so I didn't have to say it every time. Because I hate filling those forms out, you know, time after time after time with different specialists and you're in the same system thinking, why do I have to fill this form out again? It's right there and I just filled it out last year. So now I just bring my own with me and I I actually am sort of a trouble patient, I guess. I refuse to fill out the form. So I just no, I brought my own thank you and I hand it in then and then everything's on there that they need. I don't have to talk at all talk about every single detail, but I think preparing for visits is important. Along with a list of questions coming with notes about concerns that you have. I think that's great advice. Check out the short take called 'How to Be a Patient' for more tips on how to get the most out of your visit with your health care provider. Thanks for listening today. To catch up on more episodes and to get new ones delivered directly to you, subscribe wherever you find your podcasts - Apple, Google Spotify iHeartRadio and more. If you'd like to be a guest or have an idea for an episode, let me know at www.drpatient podcast.com That's drpatientpodcast.com. Here's the disclaimer. Even though I am a doctor, I'm not your doctor. These stories, my comments and all discussion is purely reflection about what is working in the health care system and what isn't. Don't use any medical information that you hear in these episodes to diagnose or treat yourself. If you have a question about your health, get in touch with your doctor or local health clinic.