Thursday, April 13, 2006

Confessions of a Former Asthma Patient

I found out the other day that I probably don’t have asthma. After the lab results came back, apparently there was "no clincal evidence" of an asthmatic reaction in my blood, though the final verdict is still out. Great news, right? The wheezing, the coughing, the inhalers and nebulizers, the trips to the emergency room, the steroids, all the things that make asthma difficult—does this mean I get to kiss them all goodbye?

Not quite. On the one hand, yes, it is great to know that after 25 long years, I might not have to keep the term “asthma” on my lengthy list of medical conditions. Hopefully I can phase out the strong steroids I’ve had to take to control my breathing. A lifetime of steroid use has wreaked havoc on my body: brittle bones, thyroid and metabolic problems, an enlarged liver and spleen, and most recently, adrenal depletion.

But the thing that totally stinks about not having asthma is now knowing that I may never had asthma. Let me explain. I didn’t get the correct diagnoses of primary ciliary dyskinesia (PCD)—a rare genetic disorder that means I do not have the working cilia that are supposed to keep the lungs clear of mucus and debris—and bronchiectasis—the stiffening of the airways that leads to further mucus and infection—until I was 23.

Before that, I spent a lifetime battling symptoms that everyone told me could be explained away by my asthma: frequent infections, thick mucus I coughed up every day, collapsed lungs, constant hospitalizations, respiratory distress/failure, numerous ear and nose surgeries. Yet every time I showed up in the hospital, I was told there was no reason for my “exacerbations of unknown origin” if I was taking my medication. They gave me steroids and the sicker I got, the more steroids they gave me. By the time I was in college, I was spending weeks out of each year in the hospital, sometimes in the ICU, while steroids continued to damage my body.

The older I got, the more insistent I became that my asthma diagnosis didn’t reflect my symptoms or my daily life. My body was telling me one thing, and the specialists were telling me another thing altogether. After endless tests and biopsies, when I finally got the diagnosis of PCD and bronchiectasis, it was the first time my experience of illness actually matched my diagnosis of illness. At the time, we thought that the asthma was a small contributor to the real culprits, so I stayed on my inhalers and medications.

And then after a winter of lingering infections and different courses of antibiotics, my new doctor spun around in his chair and asked me a few weeks ago if I thought I even had asthma. “That’s the million dollar question, isn’t it?” I asked, shocked by the absurd irony. And when the test results came back showing no sign of an asthmatic reaction to an infection, it was bittersweet news.

It’s great that I can now focus on the medications that will target my infections, not my asthma. But it’s frustrating to know that because I was shoved into a diagnostic box that clearly didn’t fit my symptoms, I spent a lifetime on toxic drugs that I might not have needed in such large doses if I’d known what was really wrong.

Turns out my body was right all along, and while I’m glad I followed my instincts, I am even more glad I found a physician who knew the right questions to ask.

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