Saturday, September 29, 2007

Specialists, Specialists Everywhere, But for the Little Things, Not a Doc to Spare

The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.

For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.

No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)

It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.

I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.

I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.

That’s no small order.

But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?

And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?

I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.

But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….


Terry at Counting Sheep said...

Wow, like you don't have enough to worry about. How about a good internist, now that you're an adult? I can see how a garden variety pediatrician would run for the hills if he/she saw you coming, (smile) but an internist should be your "coordinator of care." If you have any nurse friends, or know any who work in a hospital, solicit their opinions. They always know who is best. If two or more recommend the same person, go for it!

Anonymous said...

Give primary care another try... we're not all afraid of a challenge ;) In fact, good primary care is about providing people--whether they have one ear infection a year or a complex history--with comprehensive care and care coordination with specialists when needed. A good adult internist would be an excellent place to head with the things that don't quite fall under your specialist's areas of expertise. You need a provider who will hear you out, no matter your concern, even if you think it's "only" minor. Primary care is the place for that...give us another chance!

wellspouse said...

I'm a transplanted Canadian. In Canada, it's just like an HMO -- everyone has to have a PCP and get referrals from him or her to a specialist for treatment. I like that system -- I guess I'm used to it, which is why I chose Kaiser, an HMO for my health care provider here. You go to the PCP for all the minor stuff, and the doctor gets to know your ongoing minor problems.

My wife is covered under a Blue Cross plan. She recently had a small stroke, which has resulted in a lot of visits to hospital and doctors offices. From this experience, it seems to me that Americans are blessed/cursed with a surfeit of choice -- you can choose your specialists, and go directly to as many as you like, but as you imply, Laurie, there's no one person responsible for overseeing your health care. Often they do not know what the others are doing, or even if they do, they often want the same tests done, each for their records, which makes for a lot of duplication and waste, not to mention aggravation and cost for the patient. I also agree with you, Laurie, the specialists often can't be bothered to get to the bottom of little, nagging problems -- and why should they? Were they trained to diagnose recurring night-time leg pain? Or in my wife's case, swelling in the foot from standing all day in her teaching job?

A lot of times it's best to have someone available who sees the big picture, and can help you avoid needless visits to a specialist who is focusing on their own narrow area.

Anonymous said...

Being a 'complicated' patient myself, I know this feeling well. All the balls in the air and no one to juggle them. I really enjoy your blog; you clearly articulate many issues I struggle with and offer insights and humor on the various situations.

Anonymous said...

Amen and Amen! My PCP who I loved, was with for years, referred lots of people to including my family, finally made it so difficult for me to be cared for that I ended up "firing" him. It seems that if you have multiple medical issues a PCP just doesn't have the time nor money to "waste" on us.

I'm searching for a PCP now. I've done it before and the minute they hear the list of illnesses, they turn me away. I can't even find someone to give me my darn flu shot every year. Yikes!

JEN said...

Laurie -

I really like and identify with your blog. I didn't think there was someone else like me - who inherited crazy genetics and has a PC, and five specialists (Rheumatologist, Endocrinologist, Psychiatrist, Orthodontist, Gastroentrologist) just to name a few.

Anonymous said...

I love my PCP, she is a pediatrian and an internist which is wonderful because, like you I have a ton of health stuff going on. My PCP jokes with me that she sometime uses her peds skills more than her "adult medicine" for my problems. I have to say that I have an exceptional PCP, she picks up where some of my specialists slack off and she's always there to listen. I was lucky, I found this amazing doctor by random, but you might see about finding a doc who does both kids and adults.

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