Sick Girl, page 22
“I bite my lip fifty times in the course of a day,” a friend once told me, speaking of the new challenges that she faced as a mother of a teenager. “I literally bite down—front teeth into bottom lip. Otherwise I’m going to say too much, tell him something he doesn’t need to hear. My son will survive even if I don’t point out how unhappy I am when I see his jeans hanging halfway down his butt.”
And Casey too would survive—and thrive—if I didn’t share how my body felt each day. By age five, Casey knew from the scar that ran down my chest and from my cabinet full of medicines that his mother had undergone a heart transplant before he was born. But he also knew from my daily exercise and my seemingly endless energy that his mother was not fragile; she just went to the doctor a lot “for checkups and stuff.”
“I’m fine, of course,” I told him after returning from a late-night visit to the emergency room (a friend came to stay with Casey while we were gone). “Just another one of those silly mommy things. Had to check it out, just to be safe. Everything’s great.”
By the time his soccer games had become all-boy events with a ref in stripes and only a short half-time break for water, our efforts to protect Casey from the fallout of my heart transplant had become second nature. Scott and I hardly had to explain an ER visit or even a few days’ stay at the hospital. As far as Casey was concerned, Mom was doing just fine—as always.
Only sometimes—not often—Mom would cry at the strangest moments. Once, she cried at a soccer game. She’d been sitting in a fold-up chair by the side of the field, watching the action intently and cheering just enough not to embarrass number eleven out there—her son. Dad was out on the field, helping signal changes in ball possession. Then one of the other boys got hit with the ball, right in the middle of the back. Hard. It knocked the wind out of him. The boy went down. The coach jogged over to him at an easy pace (if the coach had broken into a run, or if the boy’s mother had dashed onto the field, it would only make things worse). Once down on his knees, the coach gave the boy a few tough-love pats on the back and helped him to a sitting position; the boy lifted his hand to signal that he was okay, he just needed a minute. Then the boy stood up, wiped his nose on his forearm, and strode back to his position on the field. The crowd applauded.
I cried.
I also clapped and smiled, emotion welling up in me for those who fight the good fight and force themselves up from the ground. But even as I brought my hands together for a boy I did not know, I was struck by a selfish thought: how nice it would be if someone could give me a round of applause from time to time when I rose from a fall—like after an encounter with the defibrillator paddles or in the middle of heart spasm on the angiogram table.
“Why are you crying, Mom?” It was halftime. Casey came to my chair to grab the water bottle I kept cool for him.
“It’s just the sun, honey. Makes my eyes teary.”
“You can wear my sunglasses if you want.” I’d been holding them safe for him in my bag.
“Now there’s an idea! Thanks.”
My son was old enough now to wear sunglasses—kid-stylish ones with a cord that went around his neck. He was also mature enough to offer them to his mother, whose eyes looked like they needed some shade. But Casey would still believe a quick fib about the sun and proceed on his merry way.
He was a happy soccer-playing kid. Scott and I could take some credit for this; we were great parents.
Some tiny part of me was still left to wonder, despite myself, what would have happened if I had decided to get pregnant and carry a child. Would I have remained healthy through the pregnancy? Would the baby have done well even with all my medications? Answers could only be found in the stories of other heart-transplant women—some beyond the walls of Columbia—who’d gone on to give birth after their surgeries.
I heard through the hospital grapevine that Marissa went on to have a second baby post-transplant. The first child must have been all right and so opened the door for a second one. A few other babies had been born to heart-transplant women across the country as well, and I would read articles about them in magazines like People or Redbook. It was pretty much the same story each time: young woman, lifesaving heart transplant, healthy baby, healthy mom. At nearly sixteen years after my surgery, pregnancy was more of a possibility than ever for women like me because there was more data available to inform their choice. The media reports seemed so encouraging I thought maybe Scott and I should go ahead and take the pregnancy plunge, give Casey a sibling. But then I remembered the numbers—hard cold facts imparted to me by Dr. Davis when we first spoke about pregnancy—and realized that a handful of documented post-heart-transplant births, successful though they may have been, are not enough of a statistical sample to support a smart decision. Five post-transplant babies, ten, even fifteen, were not sufficient to drown out Dr. Davis’s warning words about the “carrier” and the “fetus” as they played in my mind over the years. The crux of his message was: when it comes to a life, never take a bigger risk than you have to. And really, there would be two lives at stake if I were to get pregnant: mine, as the carrier whose carefully dosed medicines would be thrown off by hormonal and immunological changes during pregnancy, and my unborn child, as the fetus who—unfortunately—would partake in my daily immunosuppressives by way of the umbilical cord.
Scott and I had done the right thing by adopting Casey. We counted our blessings. And while I could not follow the progress of the babies born to the heart-transplant women I’d read about in magazines, I was able to track Marissa’s well enough to see a longer term outcome. A few years after Casey’s adoption, one of the transplant nurses told me that Marissa’s elder child had developed a strange and serious illness. The fate of her second-born was as yet unknown. If this weren’t enough of a fright to recon-firm our decision about the way we had become parents, there was an astounding phone call to hit the point home. It came out of nowhere one evening from Dr. Ganz; the soft-spoken arrhythmia specialist who’d cared for me in the hospital while I was on the transplant waiting list. Sixteen years after he’d ushered me to the transplant that would save my life, Dr. Ganz called to ask me a question relating to my sister, Jodie. She’d been having some arrhythmia problems and had recently become his patient. In order to provide treatment in the most comprehensive way, Dr. Ganz would need to tell Jodie some details of my medical history. New privacy laws in health care required him to obtain my explicit permission first.
“I need to be able to tell your sister about what they found on the autopsy of your heart,” he said.
“Huh?”
“You do know that an autopsy was done, don’t you?”
I did not. Sixteen years after my transplant, and I was hearing about it for the first time. “You do know what they found?” he asked.
I could only make an educated guess. “A virus in my heart? The Coxsakie virus?”
“Well, not exactly. I guess Dr. Davis didn’t discuss it with you after your surgery.”
“No.”
“I’m surprised.”
I wasn’t. The last thing on my mind in the early days after my transplant was the fate of the diseased organ that had been taken out of me at long last. In line with Beverly’s story about the flaccid liverlike heart that had been brought out to the waiting room in a metal pan, I’d imagined that the surgeon had carried the bloody thing back into the operating room after the show-and-tell and tossed it into the trash without a second thought. Now Dr. Ganz was setting me straight.
“Well, Amy, the autopsy showed that you had arrhythmogenic right ventric—oh, never mind the big long name, you had a congenital heart defect that was quite serious. Very extensive. It’s something you must have been born with and lived with all your life. Eventually it caused your heart to fail.”
“But I had a virus. They found a virus.”
“There may have been a virus at work, yes. But your heart problems started when you were born, not when you contracted the virus.”
I drew the phone away from my ear and stared down at it, mouth agape, eyes blinking wildly.
How could I have been sick all my life and not known it? I’d gone for check-ups with the same pediatrician every year when I was a kid. He listened to my heartbeat; he pressed a cold stethoscope against my chest and back. Why didn’t he realize that something was wrong?
Because, Dr. Ganz explained in his gentle way, this kind of defect is almost impossible to discover; even an EKG won’t pick it up. In most cases, the first time it is identified is during an autopsy.
“So a person has to die,” I said.
“Yes. Often it will be a sudden death in a seemingly healthy person. Frequently a young person. An autopsy is done. The defect shows up. That’s how this thing usually works; the diagnosis comes after the death. But not in your case. You got a new heart—and then they found the defect.”
In other words, I had been saved even before the doctors knew exactly what they were saving me from. It’s a rare patient who gets to have an autopsy performed on her heart without having to die first. The timing made me more than just fortunate; I was an anomaly. A different sequencing of events in my life could have produced a tragic result; an energetic sprint uphill at summer camp could easily have killed me when I was just a child, but it didn’t. The severity of my defect had been of such grand proportion that my heart’s ability to withstand it for so long was, as Dr. Ganz put it, “no small wonder.”
A miracle?
Maybe even that. For the first time in sixteen post-transplant years, I could begin to see the journey of my heart illness in an entirely different way. Up until this conversation with Dr. Ganz, I had thought of myself as a woman who, at the tender age of twenty-four, had been the random victim of medical misfortune. Now it seemed that perhaps just the opposite was true: soon after my birth, I was singled out to be saved. Somehow I had lived into my early twenties without dying from a heart defect that could have taken my life much earlier. Not only had fate protected me from a premature sudden death, it also shielded me from years of psychological torment; since my body never gave me the sense that I was living with a dangerously malformed heart, I did not waste a single day of my youth in apprehension, waiting for this heart to fail me. These days of seeming wellness were a gift. They allowed me to amass an arsenal of sweet memories that would stand strong against the unsure times to follow. And when my heart finally became too sick to hide its insidious defect, it was not a tragedy in the way I had believed. It was just the arrival of an unavoidable illness that had been staved off by a long run of miraculous good luck.
It was as if my heart had put on a damn good show for me so I could enjoy a few more years of innocence. It also did me the favor of allowing medical science the time it would need to catch up with what would be necessary to save my life. If I had needed a heart transplant ten years earlier, I probably would have died; heart transplants had only just begun to be routinely successful right around the time when I needed one. With this good fortune in mind now, and viewing the onset of my illness through its new prism, I could no longer continue to see myself as having been struck down. For the first time ever, it seemed to me that I had in fact been held up—until it was the most opportune time for my body to fall. The fall itself had always been inevitable.
For the same reason, many of the mistakes that had been made by some of my doctors had also been inevitable—perhaps so much so that they should not really be called mistakes at all. Dr. Ganz hadn’t made a medical error when he’d taken me off the anti-arrhythmia drugs for one night; nor had he been wrong when he’d put me on the electrophysiology testing table. He’d made these decisions based on the best diagnostic information available to him. No amount of careful thought or review of my case could have led Dr. Ganz to discover a dangerous heart defect that was undiscoverable. The best he could do with the knowledge he had was to assume that the devil behind my sick heart was a virus because that was what the tests had shown; there was no way for him to suspect that he was dealing with a genetically deformed heart until the surgeon held the culprit in his hand. My heart was sicker than even the most brilliant sleuth of a cardiologist could have known.
Dr. Bradley too had been deceived by my secretive heart. When he’d diagnosed me as having a heart virus “on the mend,” he might have been correct. A virus that settles into an already damaged heart—one that has been struggling with a structural defect for twenty-three years—is never going to mend; it can only become part of a rapid deterioration and then be blamed for the ultimate heart failure. Dr. Bradley truly believed that the virus would play itself out and leave my heart to repair itself. But an episode of ventricular fibrillation had told him my illness was not progressing as he’d thought. When he called me at the hospital in Philadelphia and said, “You’re a very sick girl, Amy,” these words might have been as much a surprise to him as they were to me. And if this were so, it wouldn’t have been his fault.
So doctors need to be forgiven. They cannot be omniscient. The treatment of disease is riddled with all kinds of unknowns. That my heart was able to hide its defect from two highly skilled cardiologists was not a fluke, it was a reality—one that I would now have to accept. There was no unpardonable oversight on the part of my doctors that had helped the destruction along. What happened to me demonstrated that there are illnesses that can outsmart and outperform even the best doctor gods in New York City. This would be a difficult truth for me to swallow, since I was still a patient very much in need of the kind of doctor who exists only in wishful thinking: the doctor who knows everything and is always right.
“I appreciate your telling me this, Dr. Ganz,” I said, feeling more shocked than grateful, “though I have to say I wish I’d known about it sooner.”
“I understand, and I’m sorry about that. But you know, if a reason came up where you needed to have this kind of information, I’m sure Dr. Davis would have given it to you. Like if you decided to get pregnant. You’d need to see a genetic counselor.”
Ah, the effect on the fetus. Yes! It was not just the cyclosporine that stood between me and a risk-free pregnancy after all. There were genes involved. If I had decided to go against Dr. Davis’s advice and become a “carrier,” he would have been forced to reveal the genetic issues. But why hadn’t he simply opted to tell me earlier? If he had shared all the facts at the outset, it would have shortened our pregnancy talk by years. Perhaps Dr. Davis had thought it more important to set my sights ahead—on law school and its successes—than back into the past.
“Now that your sister is my patient, I’d like to tell her about it too,” Dr. Ganz said. He and I both knew that Jodie and her husband had decided against having children. Still, he wanted her to know that, as my sister, she too might have a defective heart; although in her case, the malformation must be significantly milder than mine had been. Jodie was in her forties and her heart was still quite healthy, except for some arrhythmia that responded well to medication. In all likelihood, she’d already gotten safely through the testing period that would have ratted out a very sick heart. Still, Dr. Ganz wanted to keep an eye on her, just to be safe.
My sister was going to be okay. But the wheels of my mind had already begun to spin away from Jodie, turning my thoughts closer to home—to how this new information affected me and my life. Its implications began to take shape. If I had in fact gotten pregnant, I might have been the one to carry on the bad seed that had been planted somewhere back in my family tree. How unbearable it would be to give birth to a child who would go on to experience the anguish I’d been through. Even if this child were to be spared the genetic defect, he might then pass it along unknowingly to a child or grandchild of his own. This whole cycle of illness could have been propagated by the fulfillment of a wish on my part to carry a child, come what may.
I told Dr.Ganz that he was free to tell Jodie everything.
Thank goodness I hadn’t gotten pregnant. Thank goodness Dr. Davis had held off my decision long enough for me to realize it was motherhood I was after, not the use of my uterus for gestation.
And thank goodness for Casey, my healthy boy who would never make me feel worried when he ran up a hill or across a soccer field as fast as he could.
24
AFTER HANGING UP WITH DR. GANZ, MY FIRST CALL WAS TO SCOTT. I reached him at the office and summed up what I’d just heard. He told me it really sounded fascinating, but he was very busy at work. Could we talk more about it in an hour or so when he got home? I said that would be fine and moved swiftly to my next call, Beverly, who always had lots of time for me.
I took her through the conversation step by step.
“You had a virus,” she said, even after I’d finished explaining what Dr. Ganz had just told me about the small role that the virus had played in my heart’s ultimate failure.
“I had a birth defect.”
“A virus?”
“No, I’m telling you now that it was a defect. I was born with it.”
“No one said anything about that. Only about a virus.”
“That was before the autopsy.”
“What autopsy?” I’d just told her all about it.
“The one that showed a genetic defect.”
“But you had a virus in your heart.”
This conversation was going nowhere. Beverly refused to allow any change to the diagnostic story she’d settled on years ago. For some reason, an errant virus was a more palatable culprit—in Beverly’s view—than an insidious defect. I asked her to put Dad on the phone.
I relayed the new information again, hoping for a clearer reception.
“What defect? There is no heart defect in our family,” my father said. “Except maybe your grandmother—on your mother’s side.” My grandmother had developed artery disease in her old age. But my heart’s abnormality had nothing to do with occluded arteries.
