Doctors—The Bad, The Ugly, and (At Last!) The Good

February 20, 2014 at 3:01 pm (Uncategorized)

This is the second installment in a series of essays called “The Other Side,” which explores the many reasons I have to be grateful.

I once saw a doctor who, while incorrectly diagnosing me with idiopathic pulmonary hypertension, tried to reassure me about my dire prognosis. “Well, you might not live as long as you like, but at least you’ll know what you’re going to die of. Lots of people don’t have that certainty.” I had a toddler waiting at home with the babysitter. I groped for the appropriate response. How much less time than I’d like to have with my son will I be allotted with this new disease? Is there any treatment? Or, Gee, thanks. I feel so much better now? I think I muttered something incoherent. Luckily, I sent my test results to a pulmonologist who called in a few days to tell me that I actually didn’t have idiopathic pulmonary hypertension. It was a relief, but I’m pretty sure the long, tearful days between the initial appointment the second opinion took a few months off my re-lengthened life expectancy.

I once saw a doctor who ordered me in a clipped German accent to stop being so stressed about my disease. “Go. Take a vacation,” she said. She delivered this command just a few hours after the electrophysiologist in her practice told me that he couldn’t promise me I “wouldn’t drop dead at any moment” after he off-handedly diagnosed me with cardiac sarcoidosis.

I saw a fleet of doctors who ordered dozens of unnecessary—and very unpleasant tests—because I was an “interesting case,” and I hadn’t yet learned the magic question to ask any clinician, eager to add my “data” to a paper on sarcoidosis: Will the results of this test change your treatment recommendations? Because I had good insurance and was eager to be a “good patient” and do anything and everything possible to improve my prognosis, I allowed myself to be subjected to what felt like a torture-chamber’s worth of tests. For one, an innocuously-named “tilt table test,” I was strapped down in a crucifixion-like pose and flung upside down by a mechanical arm while a Russian post-doc flitted in and out, recording my blood pressure at varying degrees of inversion.

I am done with these kinds of doctors—the casually cruel, the flippant, the generalists who try to be specialists rather than say, “I don’t know,” and the zealous over-testers who see me not as a person but as a collection of data points that must be unearthed, no matter what the cost to my body or my spirit. I’d like to report that it’s because I magically grew a spine, and learned to tell the bad and the ugly doctors to shove it. But not so much.

The real reason I am free of white-coated losers is because I am incredibly lucky. I found not one but two amazing physicians. One is the sarcoidosis guru I see in Ohio. The other is my local doctor and his team of excellent nurses who implement the treatment plan the guru conceives and deal with emergency care and disease flare-ups. Both of these doctors are kind. They are honest, and yet they are never blasé or disrespectful. They don’t bullshit me when the sarcoidosis is flaring and their treatments aren’t fixing me. But they also aren’t dire. While they aren’t afraid to say “I don’t know” when the disease is inexplicably flitting to a new organ despite their best efforts to stop it, they also don’t stop trying to make my life a little better. There is no more unnecessary talk of dropping dead or dying young.

They don’t sigh and make it clear that me and my messy disease are a problem, that if only I’d be more manageable they could swirl in with their white coats flapping and swirl out in the time they’d like to allot to me. They never shake their heads irritably when I pull out of the long list of questions I usually prepare before each visit. Instead, they actually ask, “Did we get to cover everything you’ve got there?”

Not only do these two doctors provide excellent and cutting-edge medical care, they treat me as a person, with hopes and fears—and a bad-ass disease running rampant through my body. They take my symptoms seriously. They try and treat the chronic pain and constant fatigue the sarcoidosis brings, even though pain and exhaustion don’t show up in scans. They are both willing to fight with my insurance company to ensure I get the treatments I need. But neither is a zealous “tester.” I am no longer subjected to scans and biopsies, heart cathertizations or other “minor” procedures—which really aren’t that minor— unless they need the results to decide whether to change my treatments. I’m not just a data point.

While they have different styles and different roles in my treatment, they have both steadfastly refused to let me relinquish my hope. “Every year there is a chance you’ll go into remission,” they’ve each told me more than once. I don’t think I could have survived a decade in Chronic Town without these two extraordinary physicians.

How about you? Do you have any medical heroes? Or villains? Are you getting the kind of care you deserve? Can you be grateful for the doctors you see?

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