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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Most transplant recipients are grateful beyond measure. Amy Silverstein's view, after nearly two decades with a donated heart, is more conflicted and often bleak. Much of her life, as described in Sick Girl, has revolved around nauseating drugs, ongoing fatigue, painful tests, ER visits and hospitalizations without end—and the constant fear that the next heartbeat could be her last. At low ebb, she has teetered on the edge of giving up.

My son is leaving for the Super Bowl with his dad in the morning. I imagine them at the game. The boy looks up at the man and smiles. The father smiles back. A memory is created. And while this is happening, there will be a woman hundreds of miles away who can't catch her breath. She will not have taken her medicine, and now her body has turned against itself, as she knew it would. This mother, this wife—this reluctant survivor—has made sure to leave herself no other choice. I don't have to try anymore, she will whisper. I don't have to be a goddamn miracle. She will close her eyes for the last time—in peace. There will be a death.

Can I really do this? Maybe...

Monday was my appointment with Dr. Bradley, a cardiac specialist. "I need to put you in the hospital for some tests," he said. "Fairly routine stuff." One of those "fairly routine" tests was a heart biopsy. Over the years, I've white-knuckled my way through more than 60. I still get one when I have my annual checkup. A heart biopsy is a kind of torture no person should have to endure, not even once. There is something unnatural about snipping off vital tissue from a pulsing, life-giving organ. Even the healthiest of hearts is apt to buck and sputter in revolt, breaking into arrhythmic beats as the pincer-grip moves in for the taking.

Patients are awake. They may cry out when they feel pieces of their hearts being snatched from them this way. They are likely to perceive the maneuver as a nasty yank, not the little tug that biopsy doctors promise. It's not just one, either. Sometimes it has taken my doctor 30 tries, pulling the long catheter out of my neck and emptying a bit of heart muscle onto a microscope slide, then diving back in as many times as necessary to get a minimum number of usable samples.

The day following my first one, Dr. Bradley stood at the foot of my hospital bed. "You have, or you had, at some time, a virus in your heart," he said. "There is some scarring. The damage may be on the mend." He put me on some cardiac medications. "Your heart needs to rest and recover—and repair itself, I hope."

My heart was "acting up"—what I called the fluttering in my chest that had become more frequent. Erratic beats tugged at my awareness. But Scott, my boyfriend, was graduating from Penn's law school, and I came down from New York on my usual Friday-night train for the ceremony. He began listing restaurant options: Italian, Japanese, maybe Indian. I hid that I'd been fighting nausea for two weeks. I told him Japanese sounded terrific. Toward the end of the meal, my heart began skipping beats, then pounding wildly. I began a sentence—and a heartbeat stopped me. I knew right away this one was different. This was ventricular fibrillation, V-fib, the killer. "Scotty, I don't feel right," I said.

It was obvious to the ER doctors there was no time for a slow drip of antiarrhythmia drugs; they needed to save my life. I would need to be defibrillated immediately. I saw the paddles coming toward my chest. The sound of my own words echoed back at me as if they were coming from someone else: "Don't let me die...."

"You're a very sick girl, Amy," said Dr. Bradley the next morning. That label would settle in place like cement. "Sick girl" held more meaning for me than "cardiomyopathy" ever could. The words were to creep into every thought I would ever have about myself: I am a lawyer—but I am a sick girl; it's the 10th anniversary of my heart transplant—but I am a sick girl; Scott is the love of my life—but I am a sick girl.

Back in New York, at Columbia-Presbyterian Hospital (now New York-Presbyterian University Hospital of Columbia and Cornell), I had a new cardiologist. We were going to get to the bottom of this, Dr. Ganz informed me.