What do terms like safety and quality mean for transplant patients? Is it making sure everything about the surgery is done right, there are no complications, and the new organ isn't rejected by the body, or is there more to it? My trade tends to push me to think mostly about measurable and definable consequences like deaths, infections, and side effects. I've done transplant stories, and I know about things like having to take drugs forever after surgery to keep the body from rejecting the "foreign" organ.
But I've never thought much about living day to day, month to month, year to year with another person's organ. The stories I've read and TV specials I've seen have fostered my assumption that beneficiaries of a transplant think they have been given a gift by godlike doctors who worked a medical miracle. And then, a few days ago, I read Sick Girl, written by a woman who got a new heart when she was only 24 and has struggled every one of the 19 years since. It shocked me. It was a revelation. I couldn't stop reading it. How could I have been so naive?
Amy Silverstein is not grateful. She is exhausted, often surly, and has seriously contemplated suicide. Every day is a rerun of the previous day's battles. Twice-daily antirejection drugs nauseate her and leave her suppressed immune system too weak to fend off even mild infections, necessitating frequent trips to the ER when a sinus infection runs amok. Her heart, transplanted from a teenage girl, is dumb; it has no nerves attached that tell it how hard or how fast to beat, so her resting heart rate is almost twice as fast as it should be. Two years ago when she needed surgery—another risk because of the possibility of infection—to remove a lump in her armpit, she told her loving, ever-patient husband and her heart doctor of 17 years that if she had cancer, she was ready to pack it in. The lump wasn't cancerous, but the thoughts of suicide remained. Enough suffering.
I had no idea, nor do I have any idea, whether other transplant recipients could relate similar accounts. (Consider this an invitation to tell me.) It's hard to imagine that Silverstein is the only one. Yet somehow Sick Girl, which is how Silverstein came to think of herself, is not a depressing book. Here I am, she says: I can be self-centered and angry, but I'm completely honest about my failings, I'm smart, and I'm funny. If you think I'm ungrateful, I'll understand.
It's a book that made me shake my head in disbelief with every chapter. What a potent reminder it was that quality is about more than walking out of the hospital alive.