In the last two weeks I’ve run into a few HPS’ers looking for a doctor, and so thought I’d blog briefly about doctor hunting with a rare disorder. It’s a chore, let me tell you!
If you’ve got a rare disease, even if you’re relatively healthy at the moment, you can’t simply front at the neighborhood doc-in-the-box family clinic and expect to always find what you need.
Nope. Fighting Hermansky-Pudlak Syndrome is a war, and when you’re fighting a war, you choose your generals carefully. It’s a task that requires lots of forethought and frankly, strategic planning. (hmmm….memo to George W. on that one.)
I can’t promise my methods would work for everyone. Perhaps one of the biggest perks of my job is great health insurance that allows me a little latitude to doctor hunt and take a few out for a “road test” of sorts.
The first thing I looked at is which area hospital I’d want to be at in the event something major happens. I read up on the local hospitals. I live in suburbia, and have three hospitals within five miles of me. They’re all great hospitals and it would be handy to be able to go to a doctor that’s close.
But, knowing that if something major is going to happen, it’s probably going to concern something bleeding, pooping or wheezing too much, I looked at each hospital’s programs concerning hematology, GI issues and pulmonology. I got the impression that my three nearby hospitals were into babies, heart attacks and strokes. The University of Kansas hospital, however, is the only hospital in my region with a lung transplant program (so they’re used to difficult pulmonary cases), a hemophilia program (although I don’t have this, it’s the closest thing I could find to HPS) and it’s an academic research hospital. I’m betting (and so far it’s been true) that this means that this environment is more into the complicated or the great teaching case. It’s likely I could find someone there who would be willing to take an academic interest in me and not just dispense antibiotics for the odd cold and rush me out the door to fill the daily quota.
The next thing I did is look at the clinics associated with the hospitals on my short list. Nowadays most clinics post biographies of their doctors on their Web sites. Often you can find out everything from whether the doctor has any special interests, to what they’ve published lately (if they do research) to what their hobbies are in their off time.
Reading all of those bios took a lot of time.
I narrowed my list down to three. I called to make appointments with each. When the clinics asked me what I was coming in for, I explained that I was looking for a new doctor and that I had a very rare disorder, and I really just wanted an appointment time to chat with the doctor and ask a few questions about them. I get the impression my request was unusual, but they scheduled the time.
The first doctor and I just didn’t “gel.” She was fine, I’m sure, but she seemed a little off-put that I’d waste her time to ask her questions about herself.
The second doctor was my favorite going into this process anyway. He’s a general practitioner, but started out in pulmonology. Before medical school, he was a respiratory therapist. I knew from his profile that he writes poetry in his spare time, has a keen interest in rural medicine and likes to spend his free time on his farm. He’d been at KU for a while, and seemed unlikely to be leaving for greener pastures. His kids are in local high schools.
This is important to me because while my health is easy to manage right now, it won’t always be that way. I look at every trip to the doc as an opportunity to share what I’ve learned about HPS lately – a little educational opportunity. I’m building a rapport, an understanding, and I hope, planting seeds that will come in handy one day if I really need them.
I explained why I was there, that I wanted to get to know him better, and he seemed very impressed and pleased that I’d do that. (A very good sign.) Some things I wanted to know:
· Knowing that I would never find a doctor with experience with someone with HPS in Kansas City, I explained I wasn’t expecting him to know everything about HPS. I was more interested in his interest in learning about it.
· I asked him what his philosophy was regarding what a patient/doctor relationship should be like? I know he doesn’t have time to read every latest academic paper about HPS, but rest assured, I do. I was looking for a doc that was interested in forming a partnership with me, not dictating to me. Don’t get me wrong. I have the utmost respect and admiration for my doctors. I’m in awe of them actually. But, I read a lot and when something seems odd to me I want to discuss it. I want to understand why they’re doing what they’re doing. I don’t want to be viewed as neurotic if I bring up something I’ve read.
· I wanted to know how he felt about collaborating with the doctors at the National Institutes of Health. I’m currently in a clinical trial, and have been part of investigational trials since I was officially diagnosed. The docs at NIH are the world’s experts on HPS. I want my doctor to be comfortable calling NIH if something comes up that is complicated.
· Even though it sounded like this doc. wasn’t planning on going anywhere any time soon, I asked him about it. I’m going to a lot of effort to have continuity of care, to train someone about HPS, and in the first year of my diagnosis I had two docs, early in their careers, leave town for great opportunities in other cities. While I’m happy for them, it sort of defeats my master plan.
· Then I wanted to know practical things. If I was having a problem that I wanted his input on, how easily would he be to reach? Would I spend days in gatekeeper hell trying to get a message to him?
· I expect that if I’m coming in for a same-day appointment I might always get to see him. But, I’ve run into the problem of other medical team members, not understanding HPS, not treating my symptoms as seriously as I’d like. We’re supposed to, for example, be very vigilant about colds, coughs etc. If I come in saying I’ve had a nasty cough for a few days, I don’t want to get sent home with an order to drink orange juice and to come back in three days if it doesn’t improve. What would be done to help educate the rest of the “team” about HPS?
Lastly, I was looking for a rapport. How did he react to me and my “pushy” questions? He seemed thrilled to get them. In fact, I was his last appointment of the day and he hopped on the Internet to look at the HPS Web site and spent time just chatting with me about HPS in general etc.
Yes, it would be easier to have a doctor that’s closer. But, in reality, the biggest hassle is getting to the doctor. Yes, one place is 10 minutes away, and KU is more like 25 minutes – but I’ll spend an hour waiting on a cab either way. I’d rather be with a doctor who is going to pay attention to my special needs and make my appointments productive than go to someone who’s not going to take that kind of time just because they’re a bit closer. The extra cab fare is worth it.
If you’ve got a rare disease, even if you’re relatively healthy at the moment, you can’t simply front at the neighborhood doc-in-the-box family clinic and expect to always find what you need.
Nope. Fighting Hermansky-Pudlak Syndrome is a war, and when you’re fighting a war, you choose your generals carefully. It’s a task that requires lots of forethought and frankly, strategic planning. (hmmm….memo to George W. on that one.)
I can’t promise my methods would work for everyone. Perhaps one of the biggest perks of my job is great health insurance that allows me a little latitude to doctor hunt and take a few out for a “road test” of sorts.
The first thing I looked at is which area hospital I’d want to be at in the event something major happens. I read up on the local hospitals. I live in suburbia, and have three hospitals within five miles of me. They’re all great hospitals and it would be handy to be able to go to a doctor that’s close.
But, knowing that if something major is going to happen, it’s probably going to concern something bleeding, pooping or wheezing too much, I looked at each hospital’s programs concerning hematology, GI issues and pulmonology. I got the impression that my three nearby hospitals were into babies, heart attacks and strokes. The University of Kansas hospital, however, is the only hospital in my region with a lung transplant program (so they’re used to difficult pulmonary cases), a hemophilia program (although I don’t have this, it’s the closest thing I could find to HPS) and it’s an academic research hospital. I’m betting (and so far it’s been true) that this means that this environment is more into the complicated or the great teaching case. It’s likely I could find someone there who would be willing to take an academic interest in me and not just dispense antibiotics for the odd cold and rush me out the door to fill the daily quota.
The next thing I did is look at the clinics associated with the hospitals on my short list. Nowadays most clinics post biographies of their doctors on their Web sites. Often you can find out everything from whether the doctor has any special interests, to what they’ve published lately (if they do research) to what their hobbies are in their off time.
Reading all of those bios took a lot of time.
I narrowed my list down to three. I called to make appointments with each. When the clinics asked me what I was coming in for, I explained that I was looking for a new doctor and that I had a very rare disorder, and I really just wanted an appointment time to chat with the doctor and ask a few questions about them. I get the impression my request was unusual, but they scheduled the time.
The first doctor and I just didn’t “gel.” She was fine, I’m sure, but she seemed a little off-put that I’d waste her time to ask her questions about herself.
The second doctor was my favorite going into this process anyway. He’s a general practitioner, but started out in pulmonology. Before medical school, he was a respiratory therapist. I knew from his profile that he writes poetry in his spare time, has a keen interest in rural medicine and likes to spend his free time on his farm. He’d been at KU for a while, and seemed unlikely to be leaving for greener pastures. His kids are in local high schools.
This is important to me because while my health is easy to manage right now, it won’t always be that way. I look at every trip to the doc as an opportunity to share what I’ve learned about HPS lately – a little educational opportunity. I’m building a rapport, an understanding, and I hope, planting seeds that will come in handy one day if I really need them.
I explained why I was there, that I wanted to get to know him better, and he seemed very impressed and pleased that I’d do that. (A very good sign.) Some things I wanted to know:
· Knowing that I would never find a doctor with experience with someone with HPS in Kansas City, I explained I wasn’t expecting him to know everything about HPS. I was more interested in his interest in learning about it.
· I asked him what his philosophy was regarding what a patient/doctor relationship should be like? I know he doesn’t have time to read every latest academic paper about HPS, but rest assured, I do. I was looking for a doc that was interested in forming a partnership with me, not dictating to me. Don’t get me wrong. I have the utmost respect and admiration for my doctors. I’m in awe of them actually. But, I read a lot and when something seems odd to me I want to discuss it. I want to understand why they’re doing what they’re doing. I don’t want to be viewed as neurotic if I bring up something I’ve read.
· I wanted to know how he felt about collaborating with the doctors at the National Institutes of Health. I’m currently in a clinical trial, and have been part of investigational trials since I was officially diagnosed. The docs at NIH are the world’s experts on HPS. I want my doctor to be comfortable calling NIH if something comes up that is complicated.
· Even though it sounded like this doc. wasn’t planning on going anywhere any time soon, I asked him about it. I’m going to a lot of effort to have continuity of care, to train someone about HPS, and in the first year of my diagnosis I had two docs, early in their careers, leave town for great opportunities in other cities. While I’m happy for them, it sort of defeats my master plan.
· Then I wanted to know practical things. If I was having a problem that I wanted his input on, how easily would he be to reach? Would I spend days in gatekeeper hell trying to get a message to him?
· I expect that if I’m coming in for a same-day appointment I might always get to see him. But, I’ve run into the problem of other medical team members, not understanding HPS, not treating my symptoms as seriously as I’d like. We’re supposed to, for example, be very vigilant about colds, coughs etc. If I come in saying I’ve had a nasty cough for a few days, I don’t want to get sent home with an order to drink orange juice and to come back in three days if it doesn’t improve. What would be done to help educate the rest of the “team” about HPS?
Lastly, I was looking for a rapport. How did he react to me and my “pushy” questions? He seemed thrilled to get them. In fact, I was his last appointment of the day and he hopped on the Internet to look at the HPS Web site and spent time just chatting with me about HPS in general etc.
Yes, it would be easier to have a doctor that’s closer. But, in reality, the biggest hassle is getting to the doctor. Yes, one place is 10 minutes away, and KU is more like 25 minutes – but I’ll spend an hour waiting on a cab either way. I’d rather be with a doctor who is going to pay attention to my special needs and make my appointments productive than go to someone who’s not going to take that kind of time just because they’re a bit closer. The extra cab fare is worth it.
Comments
I would never feel comfortable to ask my doctor all these questions...and would he answer them? I know my doctor since he was a resident at one of my local hospitals. I picked him for that reason (I did not know about HPS then). He has been my doctor now for over 30 years. I get the feeling that he only knows the basics about HPS and I sometimes hesitate to call him because I feel that his staff gets impatient with having to leave a message for him. He will, however, approve all that I request, but most of the tiem I have to suggest it to him. For example, I have not had a colonoscopy in years now, but he has not reccommended on...until I ask him about it. I have thought about leaving him, but can't seem to do it. What to do?
I found your procedure of choosing a doc very similar to what I do about my ophthalmologists - I tell them that I'd like them to be interested in albinism and its effects on vision, and in MY eyes (not gonna have the "all albinos have this and that" when I don't). They also need to take the time to answer my questions and discuss the latest findings - even if they disagree. If they can't do that, I move on. In May I found one of the good sort, even though I had to wait for the appointment for several months - but that's okay for an ophthalmologist, and even more so for one that takes me seriously.
Just wanted to let you know that given the circumstances I think you acted and decided wisely :-) and good luck with that doc!
Cheers,
Ally from AI
That's great! Yep, the one tough thing about finding a good doc is getting in to see them can be difficult. The only thing I don't like about this guy is I've got to make an appointment like three months in advance. If something more urgent comes up I've got to leave him a voice mail so he'll call me and either get someone to make room in his schedule, or tell me what to do or what ever else the situation calls for.