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.
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.
I tried to explain it to an interested friend. "If you come up behind me and yell boo! I'll know you did it, but my heart won't, not at first. A few minutes later, the adrenaline kicks in, and my heart will start beating like wild." When the extra slug of adrenaline hits my heart, I feel like I'm going to die on the spot, a terrifying sense that I'm on the edge of ventricular fibrillation.
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.
The sound of time passing became unbearably loud, but no one around me heard it. "You always make the best salad!" they'd rave. I'd been sick when I made that salad, so weak I had to sit down at the kitchen table three times before I got around to chopping the tomatoes. Hospitalizations, clinic visits, heart biopsies, illnesses, infections—everyone preferred to pay attention to other things. I landed in a therapist's office. "Suffering is suffering," Dr. Fisher told me. This was supposed to make me feel better?
Dr. Allen pressed two fingers far up into my armpit. When his fingers reached the lymph node, his eyes closed tight as if something had just caused him great pain. "Yeah, yeah, I feel it," he said. Here it was, after 17 years. Post-transplant lymphoma. Cancer. I couldn't find my breath. "Get dressed," he barked. "Get on the phone. Call your transplant cardiologist. You need to biopsy this lump—now. You don't want to waste one minute, believe me."
I was frozen in place. To start down this road would mean breaking a promise I'd made to myself soon after my transplant: I would fight through the little illnesses, and I'll even do the bigger ones if I have to, but never again would I fight the killers that are going to get me no matter what I do.
Dr. Allen came back to the exam room. "Did you call?" I stared at the floor, ashamed. "I can't. I mean, I won't. I can't do cancer, Dr. Allen."
"But you're such a brave soldier! You can do this, easy. Don't be ridiculous. I'll telephone myself if you like."
"No," I said. "I'm not a brave soldier. I don't want to be a soldier at all. I've fought my battle for a long time. I'm exhausted. I have my limits like anyone else, and I think I've reached them."
He reached down and took my hands in his. "As long as you live, you must fight. Always fight."
"But I've already fought."
"It's not something that begins and ends. Life is a journey, Amy, hasn't anyone ever told you that?" He kept his other patients waiting and held my hands tight until he could tell that it was ok to let go.
I didn't have cancer—but years of built-up emotion were about to explode anyway. Even Scott failed to fully understand how the accumulation of health problems had worn away my resilience and devoured my sense of hope. Transplant illnesses are not discrete occasional events that come and go. They were my everyday life. A 10-hour emergency-room visit, complete with medical errors and a hospital admission at 3 a.m., was just another big yawn to those who looked on. It was just something Amy did. A surgery no longer warranted a phone call from a friend. Why bother? Amy has them all the time. Lymphoma? Well, these things happen.
Too many things were wrong with me, too many illnesses and issues were vying for urgent attention all at once. I was overwhelmed. Exhausted. And so I fell into the dark place where people go just before they give up completely. I told Scott that if the biopsy showed lymphoma, I would kill myself immediately.
Mine was a sick-girl kind of exhaustion, the result of a combination of immunosuppression, infection, and nauseating medicines. "I used to be normal," I had told Scott once after he had implied I was exaggerating. "I remember what 'sick' felt like before my transplant. It was nothing like this."
A killer cancer might be the best thing for everyone involved, I thought. If I had died five or 10 years after my transplant, as I was supposed to, Scott and the other important people in my life would not have gotten to the point of losing all patience with me. So Amy was just going to lie on her couch for a day or two, and stop trying. I knew it was selfish and ungrateful. I was lucky just to be alive.
My underarm was still a fiery raw mess when I saw Dr. Davis, my transplant cardiologist for 17 years.
"I don't want to suffer anymore," I said. He ignored me. Out came the patient information form. "Trouble sleeping?" he inquired. "Sore throat? Dizziness, fainting? Appetite? Mood?"
"How do you think my mood is, Dr. Davis?"
Silence. "I'm completely unraveled. I can't even move my left arm. And it's not just the arm, Dr. Davis. It's the years of crap. It's illness and hospitals and specialists and denervated heartbeats and immunosuppression. I don't want to do it anymore. There's no end, and you know it."
"We need to get you feeling well again," he said.
"You always say that. It's pure bullshit!" Dr. Davis lost his smile. "I'm going to stop taking my medicines—all of them. Maybe I'll live, maybe not. I can be an experiment."
Afterwards, Scott and I stood waiting for the elevator like strangers. I could tell a storm was brewing within him. "No one can save you," he said. "It's not fair to expect Dr. Davis to make everything ok. You had a heart transplant. It's been 17 years. You have a transplanted heart, Amy. It's all up to you. It's in your hands, and you know it." Here it was again: the moment of choice.
"I'll try," I said.
From Sick Girl, published by Grove Press, copyright 2007 by Amy Silverstein