If my first liver transplant was a miracle, my second was a miracle squared.
In a country where at any moment more than 16,500 people are clinging to life, waiting for new livers, only 6500 of them got transplants last year. Yet, somehow, I received livers within weeks of being added to the long waiting list, once in 2006 and again in 2008. Why? Because not everything in life is equal.
There are protocols for these things — there always are. The United Network of Organ Sharing divides the country into 11 regions. Vermont is in the region that includes all of New England. When a liver from a deceased person becomes available, it is offered locally, then regionally and, finally, to the whole country, all through a computer system operated by UNOS. Matches are made by blood type, age and body size, but time is a crucial factor — the faster an organ is transplanted, the better the outcome. Think of it as fresh produce: Age is nobody’s friend.
Another key to waiting time: how sick the potential recipient is. There’s a scoring system for end-stage liver patients, not wholly accurate but better than nothing. Scores range from six to 40: At six, you’re pretty healthy; at 40, you’re dead. The sicker you are, the better your chances of receiving the vital organ — until you’re too sick to survive the surgery.
Depending on the demographics of the region, a patient might get transplanted with a score of between 26 and 28. In another region, a patient’s score at time of transplant might be as low as 16. Florida, for example, is known for its short waiting lists, as is Indiana.
The lists on both coasts are significantly longer.
Back to me. In 1998, I was diagnosed with Hepatitis C, but I went along my merry way until 2005, when the disease had finally zapped my liver, making it rigid and scarred with cirrhosis. The liver is one of the largest and most complex organs in the body. It does everything — processing carbohydrates, fats and proteins, and storing vitamins. It turns nutrients absorbed from food into materials that the body needs for life, causes blood to clot and breaks down toxic substances in the blood such as drugs and alcohol. The liver also metabolizes most drugs, hence the ubiquitous warning: “Not for patients with liver disease.”
By the fall of 2005, I needed a liver badly, so I signed on at the Lahey Clinic near Boston, underwent a host of evaluations, and lay down to wait. Nothing. My electrolytes went wildly out of whack, putting me at constant risk of seizures. Still nothing. Frustrated and beginning to despair, I checked myself out, against the advice of my doctors.
I began to rethink my options. I considered heading to Jacksonville or Indianapolis, for their short-list appeal, but two doctor friends of mine steered me toward a colleague at New York-Presbyterian Hospital. “Have her come here,” the surgeon in charge told my husband. “I think we can do something for her.”
New Yorkers, at least in this case, are more aggressive than Bostonians; they find what they want and go get it. In the same spirit, New York-Presbyterian takes a can-do attitude toward organ procurement. When one becomes available, the hospital charters a jet and sends a team of surgeons to harvest the donation on site — news of a fatal car accident, for example, or a shooting, can set the transplant doctors in motion.
I checked into New York-Presbyterian for yet another set of evaluations. Liver patients are not candidates for transplantation if they have other life-threatening conditions. In March 2006, I had just finished the tests and was preparing, I thought, to go home and wait. Then came the Monday morning — 1 a.m. — when the nurse woke me up and placed a speakerphone on my hospital bed. It was my surgeon. “We have a liver for you!” he enthused, sounding like a kid on Christmas. “Are you ready?” It was not a question you could answer “no” to.
My new liver had come from a woman, roughly my age, who died in surgery somewhere down South. Transplant teams in the region had taken a pass on the liver, and my team apparently was next in line. My surgeon surmised the southern team was “less aggressive” when I asked him why they turned the organ down. “Don’t know the specifics,” he added.
To say the experience was horrible barely does it justice. After the operation, I lay for what seemed like months in a paranoid delirium that actually only lasted a few days. I knew that people were out to kill me — I didn’t know why — and throw my body in the river, never to be found. I was restrained to keep me from pulling out my tubes, and the straps only verified my conspiracy theory. At one point, I swore I heard nurses outside my door complaining that I had no right to that liver. Maybe it was the delirium talking. In any case, when nobody actually did kill me, it occurred to me that it might have been the meds.
From there, I soared to a jubilant high, pumped up on prednisone, which is part of the drug cocktail used to prevent the body from rejecting the new organ. I was on top of the world, and I liked it there, ready to charge into a new life. As the doctors withdrew the steroid, I crashed to lows I’d never known before. Much later, I discovered that depression is a common side effect of major surgery. I had, as a nurse put it, “the post-transplant blues.” Other drugs, finally, put an end to the depression.
By the fall, as my husband and I set out on a celebratory cruise around the Greek islands, my new liver had begun to fail. The liver-function tests, which show the first indications of a damaged organ, evidenced dramatic deterioration. Hepatitis C is a virus that doesn’t die just because the host liver has been removed. Like cockroaches after a nuclear blast, it persists. The C virus had come back with a vengeance, and it was taking my liver down with it.
When my doctor at Fletcher Allen first used the word “retransplantation,” I was sure he was kidding. I didn’t know there was such a thing. Would I consider it? he wondered. Round two commenced in earnest on New Year’s Day 2008. I had struggled through Christmas, but by New Year’s had collapsed physically. Fletcher Allen kept me overnight, then shipped me back to New York by ambulance. This time the wait was about two weeks. Two livers became available; they chose the second one for me, that of a black teenaged boy from one of the city’s five boroughs. It’s hard to find the words to thank someone for a gift like that.
In some ways, the second transplant was easier: I knew what was coming. The psychiatrist intervened this time with drugs to keep away the delirium. But great, gaping wounds opened on my legs for reasons that have never been fully explained. One theory had me suffering from calciphylaxis, a condition, the doctors said, that was certain to kill me within six months. It didn’t. The wounds healed, finally, with the help of the impressive nurses of Porter Hospital and Addison County Home Health. The wounds did, however, leave ugly and lasting scars.
Today, I am left with a choking regimen of pills three times a day, a morbid fear of infections owing to the immuno-suppressed condition of my body, and the omnipresent threat of debilitating fatigue if I overexert myself or don’t get enough sleep. Even thinking about myself so much can become mind-numbing. But I’m skiing again and soon to be riding my horses. I can cook and garden and walk the dogs and socialize. If post-transplant life is challenging, it certainly beats the alternative.