Monday, December 15, 2008

Wanted: New Doctor

So I read this book recently, I may have mentioned it - and pretty much it gave me the self-confidence to actually challenge my health care providers without being a huge bitch about it. Name of book: "Sick Girl Speaks" - and actually, in all honesty, I had never heard of this book two years ago when I wrote an essay with the same title. Crazy how us CFers think alike. Now I'm going to have to get her permission to use the title for my essay, which isn't a big deal, she's great. And if she'd rather I don't use it, that's cool too. I'll come up with something else.

Anyways, back to challenging my quality of care.

I don't remember the last time I saw my CF doctor. Probably last February or March when I first met him. Yeah, that was the first time I officially met him as a patient of his, and the last time I saw him. I don't like this. Not one bit. But for now, it seems that my parents have convinced me not to challenge my own care.

My parents have told me that as long as I'm not having severe problems with my doctor (he orders whatever I tell them I need), I shouldn't mess with it.

I have heard of a brilliantly wonderful doctor in Milwaukee, and I would like to see her. Possibly have her consulting on my care from Milwaukee, but I would get most of my treatment here in Madison.

I don't know what to do.

I started this post last night when I was convinced that I needed to challenge my care and that I was going to for sure see the great and powerful woman in Milwaukee. Now my parents have talked me out of it, for now.

5 comments:

Amanda said...

Do what you think is best for you. You know your health better than anyone else--especially the doctor who never sees you and doesn't know you.

I chose where to go to grad school partly because I was unhappy with my old doctor. This was mostly to do with the fact that half the time I went to the doctor, I saw a his partner. And maybe that's ok for some people, because I know the CF teams discuss each patient's care together. But for me, little things like not knowing what my baseline PFTs are (they are very high, so when I was feeling bad and disappointed because my FEV1 went down by 5%, they didn't think much of it) and constantly asking me why I don't take such and such medication every time I see each of the two doctors, it was very frustrating. (Honestly, I never had issues like that until they made me "transition" to the adult clinic with a different doctor; my pediatric CF doctor was awesome.)

After moving across the state and going to a new CF clinic, for the first time in 5 years, I saw "the partner" at my last visit and was not very pleased by it (in addition to a new nurse). She didn't even bring up the major gynecological issue that had been plaguing me for the previous 3 months. I'm going to make sure I only see my regular doctor from now on. I really like her because she doesn't tell me what I have to do or tell me I'll die if I don't do as she says (believe it or not, the old doctor basically said that). She tells me the options I have and let's me decide what's best for me. (I think this is important for adults with CF, because regardless of our educational backgrounds, we are no fool when it comes to medical issues and aren't afraid to question doctors/nurses.)

I have basically made my career plans geographically based on where I could live and still go to this CF center. Although they are warming up to it, my parents weren't too excited about the prospect of me NOT moving back to my home town after graduating, but they understand my attachment to my new doctor and refusal to go to the old one. So, I found a good job at the university where I got my graduate degree and am happily settled with my husband in a house we just bought...

Point is: do what YOU think is best for you. Even though your parents have been taking care of you and your CF for years, only you know whether your doctor is meeting your emotional needs.

Tabitha said...

doctors make you, or break you. And sometimes its nice when you aren't the ones telling them what you need, and they actually have input and ideas to help you get better.

sixtytwodays said...

So, I assume you are talking about Dr. Biller. If so, I'd be interested in hearing what you heard about her. She does seem very nice, based on the handful of times I've met her her heard her speak. And, I'm sure she's as proactive as the Milwaukee (Children's/Foredert) CF staff tends to be. But, the majority of young adult patients that I've spoken to have not been impressed on a personal level. I get the impression that there are power struggles and a lot of condescending comments. One person commented that they didn't need another nagging mother... You have probably also talked to pateints who are thrilled, so disregard this if you want to. But again, I'd love to hear what you heard.

I beleive that the person in charge of the adult program has a direct impact on the pediatric program, so I'm always curious as to what others say.

Tami
mom to Emily 3 w/CF

Dancing65Roses said...

I'm going to post this here, and email you, Tami :-)

I heard that she is great from the head of the Wisconsin CF Foundation - Tracy. I have an appointment with her on February 9th, so I'll let you know what my opinion of her is. Maybe she is like another mother - but maybe I'll be able to recognize her if she came into my room. I'm just weighing my options here.

~Carla

gracefulinsight said...

I agree. to what you think is best for you. If that doctor is better go for it. Do what is best for your health.

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