Day 1: Offer of a liver only the beginning of a long road
Michael Weekley wanted to wait for the liver transplant.
He'd been feeling healthy after years of battling liver disease and told his sister he didn't want a new liver just yet.
"You wouldn't have known he was sick," said Weekley's sister, Connie Mayes of Chester, W.Va. "He was not in favor of getting the liver."
Fearful that he'd never get another chance, Mayes encouraged her brother to go ahead with the surgery at UPMC Presbyterian, even though he was leading a relatively normal life - walking to his parents' home every day and checking up on his rental properties.
Weekley never made it out of the hospital. He died at 46 in September 2002, two days after a failed transplant caused a blood clot to lodge in one of his liver arteries.
"Now I second-guess it," Mayes said. "He might have had a few more years."
The offer of a new liver, no matter how sick a patient is, brings with it a complex and difficult decision for those who've been told they need a transplant.
Patients and their families must weigh the benefits of a healthy liver against the potential complications of one of medicine's most complex surgeries.
The surgery, up to 8 hours long, requires a lengthy hospital stay.
One in six patients dies within a year of transplant. Those who live face a lifetime of potentially harmful anti-rejection medicines that can wreak havoc on their immune systems.
"You just don't know what you're getting, how the body will react," said Ellen Kerber, 65, of North Huntington, who was diagnosed with primary biliary cirrhosis 15 years ago and has been warned by doctors she may need a transplant. "The transplanted liver comes with its own set of problems."
Kerber is not on a waiting list -- and she's unsure whether she wants to be -- because her MELD score is 11. MELD is a measure of a patient's mortality, ranging from 6 for the least ill to 40 for the most critically ill.
She lives relatively well. Despite the disease, Kerber gets around well enough to watch her grandchildren one day a week. This winter, she engineered the painting and carpeting of her 40-year-old home on a dairy farm where she still helps out.
"What am I giving up to get a liver?" she said. "But if I wait until I'm unable to move anywhere, then I've waited too long."
There are plenty of sick patients across the country who don't wait.
Ken Henshaw of Emory, Texas, for example.
In 1999, he was diagnosed with a liver illness so fierce it forced him to quit his job as a restaurant waiter. The disease, called primary sclerosing cholangitis, made him fatigued, itchy and turned his skin yellow.
His physical stamina just wasn't there.
Henshaw, 33, was placed on the waiting list at Baylor University Medical Center in Dallas, two hours from his home. Last June, with a MELD score of 16, doctors called with an offer of a new liver.
"Don't you think you should wait?" his parents said to him.
Henshaw, who was eager to move on with his life and put behind the endless medical tests, didn't think about it twice. He had a rare blood type and worried another match would never come.
"I was doing nothing but waiting to get sicker anyway," he said. "I didn't want to die waiting. I wanted to have an opportunity to get better."
The transplant didn't go well.
He was awake only for a few days when his condition went downhill. He slipped into a coma. Within 10 days, he received a second transplant. That surgery, too, led to complications, including infections and a bout with pancreatitis, an inflammation of the pancreas that is deadly in one of five cases.
Henshaw recovered, but veins and arteries connected to his liver have clogged. His condition has worsened to the point where he needs another liver and an upper bowel transplant.
He expects to travel to Pittsburgh's UPMC within a month for that procedure.
"I never really said 'I regret doing it' because I had to do it to be alive," he said.
His mother, Barb, who is an active member of several online support groups, said Ken might not have survived had he not been in relatively good shape.
"You have to remember people who have a fatal disease arm themselves with any and all information they can get their hands on," she said. "So we understand all of the risks. But, honestly, what choice does anyone have? Transplant or death? Pretty easy decision."
Doctors say transplant candidates must balance the benefits against potential risks.
Though some people may suffer from side-effects like itching and fluid retention, that alone is no reason to put yourself through a transplant, said Dr. Michael M. Abecassis, chief of transplantation at Northwestern Memorial Hospital in Chicago.
"We tell patients, 'It's one thing to be tired, it's another to be dead,' " he said.
Patients who face those problems can seek to increase their MELD score by making a request for so-called exception points to a regional review board comprised of doctors.
Dr. Amadeo Marcos, the former transplant chief at UPMC, said he believes low-MELD patients who need a transplant should get it, even if they don't qualify for exception points.
"We don't let patients talk us into transplanting," he said. "This isn't plastic surgery. If somebody says, 'I don't like my nose. Change it,' that's fine, but this is a pretty serious operation plus you are using up a liver that may cause someone else to die because it's not available to them."