Trial by Transplant
Book Excerpt
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.
He arranged for a test that would target the right drug to protect my heart from slipping into ventricular fibrillation. It would be uncomfortable, he warned. A catheter would be inserted into my groin and maneuvered up into my heart, where its deliberate tickle would induce an arrhythmia. A medication would be released into my bloodstream. If it didn't stop the abnormal rhythm, the catheter would be withdrawn, my heartbeat would return to normal, and another drug would be tried.
The catheter probed my heart. "I feel dizzy," I said. The doctor pulled back the catheter, expecting my heartbeat to settle down. Instead, it just stopped. My heart, my breathing: stopped. The telltale flat line appeared on the screen. I was "dead." I saw black. One moment I was there, and the next I was not.
I came back. "Here I am," I said, opening my eyes.
"I don't think any medicine is going to work," said Dr. Ganz. "You need to have a heart transplant."
"I won't do it."
"There really isn't any option. We can get the paperwork going. You'll be on the list in a few days."
"I said I won't do it!" I yelled at my gentle doctor. My father was weeping at my bedside. I felt desperate to escape his anguish. "OK!" I said. Dr. Ganz told me I had made the right choice. I would always wonder: Did I make a choice at all?
I was the luckiest patient on the waiting list at Columbia that June in 1988—young and desperately sick, making me No. 1 on the list for the New York area. I turned 25 in the hospital. I got engaged. Scott knelt at my bedside. "I was wondering," he said—"will you marry me?" I shouted out: "Yes!"
A new heart was transplanted into my body on June 24. "Please don't let me die," I said to Dr. Solomon, the transplant surgeon. He was well used to not letting people die. He knew that by the end of my surgery he would have performed "just another everyday miracle," as heart transplant surgeons say when they emerge from the or. He was pleased to report to the waiting-room group that my donated heart had burst into robust, vigorous beats from the moment the heart-lung machine was switched off. It just flew on its own.
My new heart had a 10-year life expectancy, and I was warned how difficult the first year would be, living with high levels of immunosuppressant drugs and an ever present risk of my body's rejecting my new heart. But no doctor had explained to me just how I was supposed to live out my ticking clock.
I will not live scared. It was one thing to jot this down in tiny blue letters in the safety of my hospital room. It was quite another to live it on the streets of New York City. I would wear one of the masks a nurse had given me before I left the hospital. She had warned me about the dangers of being a newly transplanted, immunosuppressed patient caught in a crowd of germy New Yorkers.
I couldn't wait to get home so I could wash my hands and check my pulse. No one spoke of it before I got out of the hospital: Transplanted hearts do not feel natural most of the time. They cannot beat normally, because they have been cut off forever from the central nervous system. When they took out my heart, and my donor's heart, all the nerves were severed. It's not possible to reattach the bloody tangle of dangling nerve fibers.
Without nerve connections to instruct the heart to speed up, slow down, or maintain the status quo, a transplanted heart will rely on the flow of adrenaline in the bloodstream. When excitement or fear hits, the typical transplant heart will flounder until a rush of adrenaline—often in overabundance—arrives. This constant dependence on adrenaline causes a very fast resting pulse—usually around 100 beats per minute—that can be set off into a racing gallop by additional adrenaline dumped into the bloodstream. But there's a delay.
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