Trial by Transplant

Book Excerpt

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Amy Silverstein is 44. She got a heart transplant as a 25-year-old law student.

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The baffled pump beneath my breastbone reminds me over and over that when it is asked to rise to an occasion, it has no idea what in hell to do. I'm caught in a body that thinks it's just now had a boo! moment that's come and gone. My heart should have returned to its resting state; instead, it's riding high and wild on a tidal wave of adrenaline.

Scott and I were married at 7 o'clock the evening of June 24, 1989, exactly one year after my transplant. I drifted down the aisle. One year ago, at this same time, I was on an operating table attached to a heart-lung machine. I had to break away from the party at the stroke of 10 to squirt a syringe of cyclosporine into my mouth. A dose was necessary every 12 hours, and no playing around with the timing. Squirt: a shot of nauseating bitterness. Slurp: a swig of apple juice stashed with the cyclosporine. Done. A quick dash through the gilded hallways, and I would be back at my grand wedding, looking no worse but feeling quite different. Cyclosporine was my prescribed poison. In just a few minutes, nausea would rock my limbs with land-borne seasickness. My hands would shake. The shaking would become intense, driving me off the dance floor. There would be a headache, the kind that tries to twist my face into a wince. I would fight my way through the side effects. I would not reveal them.

From the moment I introduced my body to a whopping dose of immunosuppressants, I could feel it recoil from what the chemicals were trying to do. Every day, twice a day, I felt this war coursing through me and was sickened, not just by the physical side effects but also by the disturbing thought that I had to poison the most health-giving system in my body in order to stay alive.

I passed the bar exam. What my friends did not know was that I bled during the exam, right through my pants and onto the faux wood seat of my chair, a sopping pool of it. From the get-go, my transplant medicines had caused terrible problems with my period. When I felt the first unmistakable sense of what was about to happen to me, I put my pencil down, closed my eyes, and made a silent vow: I will finish this exam even if I bleed to death. Before long Scott and I were on our way to the hospital. It took a transfusion to replace what I'd lost in the span of a few hours. But I'd passed the exam.

What is 10 years to a 25-year-old woman? I had not been robbed of my youthful mindset. I was still just a woman for whom 10 years could be perceived as a good long time. It was practically a lifetime.

But time passed quickly. At first, I counted in post-transplant years: one year after, two years after, three years after. Somewhere around seven, the count would become more focused on my future. Year 8 was "two years left before I'm supposed to die," and year 9 was the one-year warning. At year 10, the counting system would shift to borrowed time. The years would become eggshells that I would walk on with diminishing confidence: I should have been dead one year ago; I should have been dead two years ago.... Ten years would no longer be a gift. It would be a curse.

I felt more and more vulnerable. My likelihood of survival would decrease as time went by. There is no point at which, statistically speaking, a heart-transplant patient is on safer ground, because from the moment a donor heart begins to beat in a foreign chest, the immune system begins to destroy it. My annual exams showed the beginnings of untreatable transplant artery disease—vasculopathy is the name for it.

After my 11th sinus infection in less than a year—my suppressed immune system made me vulnerable to every bug—I complained to Lynn, a close friend. "You've just got to stop getting all these infections," she said briskly. "I think you should do what aids patients do—take these new drugs that pump their immune systems way up. If you got your doctor to prescribe them, you wouldn't be so sick all the time."

"Yes, but I would be dead!" I expected a dear friend like Lynn to understand the fundamentals of transplant immunosuppression. Then it occurred to me: Perhaps Lynn would have been able to grasp more if I had hidden less. If she didn't get it, whose fault was that, really? Mine.