You are a Pawn of Academic Medicine

May 17, 2006 at 2:05 pm (Uncategorized)

Going to doctors has become a part-time job for me. It’s a rare week when I don’t have to show up at some generic medical office and fill out a variation of the same form.

Today, I had to visit Dr. X, one of the two cardiologists in Helena. The specialists in New York and Philadelphia who treat my sarcoidosis quite rightly want me to have a local heart doctor to contact in case any emergencies arise.

Dr. X had the misfortune of doing his residency at Emory University, one of the “top cardiac centers in the country,” and he made sure to tell me this before he had both feet in the doorway. I’m not sure exactly what happened to Dr. X at Emory. Maybe someone put crazy glue on the earpieces of his stethoscope or exchanged a water balloon for the angioplasty one. Who knows. But he definitely had some unresolved issues about the practice of medicine in an academic setting.

“Who diagnosed you with cardiac sarcoidosis?” he asked right off the bat, in a waspish tone.

I’d had an extra cup coffee this morning, so I was on the punchy side. “Oh. I made it up,” I said. The pre-sarcoidosis me tended to be more deferential towards the White Coats. But after spending so many hours at appointments with them, I’ve lost a good bit of my patience and I’m rarely in the mood for ass-kissing. I mean, come on. Where else in the business world do you get away talking to your customers like that?

Dr. X had seen several patients with cardiac sarcoidosis back in the day at Emory. I could tell right off the bat that I was locked in an office with a small-town doctor with a big-city sized inferiority complex. There were those comments about “top cardiac centers,” there was his overly-stylish tie, and then there were the framed commendations all over the place. If NAMBLA had recognized this guy as a good doctor, he would have framed the certificate and stuck it up on the wall. And then, there were the dozens of remarks he made that insinuated that anyone who practiced medicine within forty miles of a major university was in cahoots with the forces of evil.

“I read your chart, and I see someone who has been tested for the sake of testing.” It’s true. I have had nearly every diagnostic test known to man–EKGs, echocardiograms, MRIs, PET scans, heart catherizations, stress tests, tilt table tests, nerve conduction tests. “You are a pawn of academic medicine,” he announced, shaking his head.

Apparently when Dr. X, was at Emory twenty years ago, they mostly didn’t treat cardiac sarcoidosis. However, now the standard treatment is to start people on a high dose of prednisone–the only proven agent to minimize the inflammation caused by the disease–and monitor the hell out of you. The risk with cardiac sarcoidosis is what is tactfully called “sudden death” in the medical literature. Most of the cases of cardiac sarcoidosis are detected posthumously upon autopsy–usually after someone has dropped dead from heart problems. But Dr. X has a patient, God help her, with cardiac sarcoidosis who he doesn’t treat. “She’s just fine,” he said. I thought about all those poor people who were just fine, until one day the electrical systems of their hearts, which were compromised by the disease, short-circuited –unannounced and without provocation–and ZAP, another “sudden death” to add to the statistics.

I wasn’t in the mood to debate treatment protocols. That’s why I spend most of my and Jay’s disposable income on doctors. If I wanted to know this stuff so freaking well, I would go to medical school. All I want is a lackey who will take orders from the experts and do an EKG if my heart starts flip-flopping around in my chest. I have enough experts to cast a Broadway musical. I don’t need another one.

“Why are you brow beating me?” I finally asked. “What do you want me to do? Ignore three major medical centers, go home, and stop taking my prednisone?” He backed off and became extra-charming. “No, of course not,” he said. “It just seems to me that the treatment is making you a lot sicker than the illness.” And then he added that I should be aware that academic doctors don’t always solely have your best interests at heart. Those devious doctor/professors are more interested in publishing about a weird case than actually curing you. Duh. Does this jackass think I don’t watch House?

So, with two hours of my time sucked down the seemingly bottomless vortex of medical appointments, our session ended with him reassuringly touching my shoulder and proclaiming that he was going to write a letter to Mt. Sinai Hospital in New York to try to discern their reasoning. I wanted to say that this was all way past reason, but my coffee had worn off.

The reality is, he’s mostly right. I am nothing but a guinea pig. Nobody knows anything about my illness. The patient populations in articles I’ve read about cardiac sarcoidosis in academic journal are of eleven or twelve people. Some get as high as twenty-five. It’s pretty hard to make sound scientific conclusions based on data like that. So, my doctors do their best. Yes, I think I have been unnecessarily tested. Yes, I bet I do crop up in a paper some day. And I know that all the monitoring and poking and prodding they do will benefit future patients more than me. How else does medicine move forward? Did they really know that the first heart transplant would work? Or the first chemotherapy treatment? But I need to believe that my super-specialists have my best interest at least somewhere in their hearts.

Dr. X was also accurate that the treatment has been far worse than the disease. I’ve gained 60 pounds on the prednisone. My face is bloated; my fingers look more like Vienna sausages than appendages. I used to be able to ride my bike for 120 miles, but now, I’m pretty proud of myself for eking out 40 minutes on the elliptical trainer. The prednisone is eating away at my bones and makes it likelier I will get cancer some day. And it might not be enough. When they last tried to taper me off the prednisone, my EKG immediately got funky. The drugs they have lined up next are no nicer than the prednisone.

But there comes a point when you have to trust someone with medical decisions. I stay as well-informed as I can, but I pay for good care (and travel a hell of a long way for it), precisely so that I don’t have to think about it all the time. I don’t like being fat; I don’t like my shiny moon face. But sudden death sounds a whole lot worse than plus size clothing.

2 Comments

  1. Larry and Jane Stanfel said,

    Very entertainingly written, Babacita, but we so regret the sobering peroration. We pray some of those academics will become inspired.

    Love, M&M

  2. Richard Finkel said,

    Hello Rebecca,

    Roz forwarded your blog to me. In my own travels through the health care system I’ve experienced MDs who either become angry with me, delegitimize me, or dismiss me out of hand whenever they are unsure of what is wrong. Many of the oafs practicing medicine today have no idea that they are impairing the health of their patients when they behave in this manner. It has gotten to the point where I am phobic about MD visits…I avoid them at all costs except for those with female providers, many of whom are more compassionate.

    The medical schools are failing miserably. They don’t produce physicians, in the classical sense of the word, but rather insensitive piece workers and supertechnicians.

    So I feel very sorry that you have to endure not only your illness, but also the toxic overlay of the health care system.

    By the way, I have had many patients who required large doses of prednisone and am not aware of malignancy as a risk. Of course I have not practiced in many years so there may well be developments of which I am unaware. Anyway, check this out…it may be that this is one concern that you need not have.

    By the way, it is only now that I am beginning to realize what a blog is, so if I am not interacting with it correctly let me know.

    Your perceptions are so well expressed…I look forward to reading more of them.

    Best wishes,

    Richard Finkel

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: