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Donating Lives

Living Donors Offer New Hope To Liver Patients

By Debra Melani

Denver Rocky Mountain News Staff Writer

Before she hands over a photograph of her excised liver, Deb Ashe warns visitors that they'd better not be squeamish. One look at the grotesquely mottled organ tells the story.

A month ago, the Denver native wasn't just knocking on death's door - she was crossing the threshold.

"I was in pretty dire straits," a gaunt Ashe said, sipping water in her all-too-familiar room at University Hospital. "I'd been waiting so long. I was tired, really tired."

Hepatitis C had ravaged Ashe's liver for more than a decade. Other organs were beginning to shut down. Four years ago, Ashe probably would have been dead, joining nearly 6,000 Americans who die waiting for organ transplants every year, but she had another option: taking a portion of her sister's liver.

Denver's University Hospital was the first medical facility in the country to perform a living-donor liver transplant on an adult, just over three years ago, and now 58 centers offer the procedure.

Last year, 218 such transplants were performed, a 300 percent increase in one year, according to the United Network for Organ Sharing. And as cases of hepatitis C - which account for more than half of University Hospital's transplant patients - continue to climb, living-donor transplants are expected to keep increasing.

The transplants have become "one of the hottest issues being discussed at transplant meetings," said Dr. Igal Kam, chief of transplant surgery for University Hospital. "This is probably the best way to expand the donor pool."

But doctors don't like putting a healthy person at risk from major surgery, Kam said. Yet all too often it's the only answer other than watching a patient die, he said.

Facts And Figures

How To Give

Nearly 14,000 U.S. patients are on the liver waiting list, and a fairly constant 4,500 livers are donated every year. About 1,700 Americans a year die waiting, said Dr. James Trotter, a liver specialist at the University of Colorado Health Sciences Center.

"But it's a lot less now that we have living-donor transplants," Trotter said.

Ashe, her friends and her family were coming to terms with the likelihood that they were not going to get the liver she had been waiting for since January. They were beginning to accept death. Then, without telling Ashe, sister Kim Nance was approved as a living donor.

"She was so sick, and I just couldn't... It was breaking my heart," said Nance, 44. "I didn't want her to die."

The next day, the two were wheeled side by side on stretchers into a preoperative room and prepped for a major surgery. "I was so scared," Nance said, a wife and mother of two. It was a hard decision, but it came down to whether she would go to the hospital and help her sister die or help her live, she said.

Surgeons cut a large piece off Nance's liver. It was quickly sent to an adjoining room, where it was transplanted into Ashe.

While still major, Nance's surgery was relatively quick. Her spliced liver should regenerate to its full size in less than two months. Ashe's might take a little longer. The liver is the only major internal organ capable of regrowth, Trotter said.

Nance's act was no small feat.

"It's created a sort of unspoken bond between us," said Ashe, her skin and whites of her eyes still yellow from bile that her liver couldn't process. While she can't recall her first words to her sister - "I don't remember the first week in ICU" - Ashe knows she'll be forever grateful.

"I'm celebrating my 46th birthday. I wouldn't have been without her," she says.

Ashe, whose daylong surgery was performed Oct. 20, was hoping to be released from the hospital on her birthday, Nov. 6. But she went home the next day, after a two-month stay.

Nance was in the hospital for only six days, but she said the first two weeks were hard, with pain and debilitating fatigue. She's not expected to be back to full work capability until Christmas.

Living donors face less than a 5 percent risk of complications and less than a one-in-1,000 chance of death, Kam said. One adult has died since the procedure was first offered to adults in the United States, and the deaths of two adult living donors have been reported during child transplants.

It might be small, but the risk is still there, said Denver resident Bob Morse, 55, another hepatitis C patient. Morse rejected the idea of using his youngest son, 33, as a donor when he learned that he was a match. Living donors need a similar body structure and acceptable blood type.

"When I talked to (his doctor) about it, about how serious an operation this is, what the complications are, that it's fairly new and not everybody's survived," Morse said, he couldn't do it.

But Morse, who was put on the transplant list only last week, acknowledged that if death were imminent, he might see things differently. And doctors probably would not have approved a living donor for Morse yet, anyway.

The risk to the living donor is too great to take if the patient is healthy enough to wait for a cadaver organ, Kam said. That procedure threatens only one life, he said.

Also, if a patient has been given a week to live with multiple organ and respiratory failure, for instance, a living donor would not be approved, Kam said. The patient's poor chances of surviving the transplant would outweigh the risk to the healthy donor, he said.

The risk to the recipient and the donor increases exponentially as the surgeon's experience with liver-transplant surgery decreases, Trotter said. He cited a study in the New England Journal of Medicine noting that mortality rates for liver recipients were 28 percent higher at centers that performed fewer than 20 transplants a year.

University Hospital performed 73 liver transplants last year, 12 of them from living donors. Average survival rates were 90 percent at one year and 79 percent at five years. That compares with a national average survival rate for 1999 of 87 percent at one year and 74 percent at five years.

"Surgeons who do not do at least 20 or 30 transplants a year should not enter into this adventure," Kam said. "This is a hard surgery that requires a lot of experience."

Living-donor transplants have been performed on children since the 1980s, said Dr. Michael Narkewicz, medical director of the pediatric liver-transplant program at Children's Hospital in Denver. They became a necessity at other centers where children were increasingly dying waiting for organs.

"If you go to New York City, almost all the young kids transplanted are living-related transplants," Narkewicz said. Children's Hospital has done only one such transplant, in 1996, giving a piece of a father's organ to a child who had sudden liver failure. Both are doing well, Narkewicz said.

With transplants between relatives, rejection is less of a problem, but using an adult liver for a child presents more technical problems because of mismatched blood-vessel sizes, he said.

Children's hasn't had to do living-donor transplants, because of an efficient organ-acquisition program, Narkewicz said. "We have not had a child die on the liver waiting list," he said.

That's good news for Shelley Smith, who is heeding doctors' advice and waiting for a liver for her 9-year-old son, Russell.

"I want to do what the doctors say is the ideal situation, and that is a whole liver from a school-age cadaver," said Smith, a Pueblo resident who is living at Children's Hospital with Russell.

"So we have to wait for someone else's tragedy." That's the hardest part, said Smith, whose son was born with a liver disorder.

"I used to look at Flight for Life helicopters coming in and think, 'Oh no, what poor kid is in trouble?"' Smith said. "Now I look at it as hope."

Her guilt has driven her to chaplains more than once. They ease her mind, explaining that the grieving family gets some peace out of saving another child's life, Smith said.

Reconstructive surgery on Russell's liver saved him as an infant. The first few years were rough, but he seemed to be improving, Smith said. Then Russell acquired a parasite, and the infection has nearly destroyed his already-frail liver.

If it weren't for his shocking yellow color, visitors might not realize the severity of his condition, as he often can be found tackling Play Station and Nintendo games in his hospital bed.

But his life isn't typical, and it hangs in the balance, as do 70,000 other American lives dependent on receiving livers or other organs.

Smith knows she's lucky to have the living-donor option. Her brother has been approved as a match. Statistically, a match is found in only one out of four tests, Narkewicz said.

"It's my security blanket," Smith said. But she knows that most of the sick kids she's been surrounded by at doctor visits and hospital stays in the past nine years don't have that option.

"Many people don't know how bad the need is," Ashe said.

She added that there's nothing like waking up one day and realizing you've been given another chance. "I've been given the gift of life," she said.

Contact Debra Melani at (303) 892-2301 or melanid@RockyMountainNews.com.

Copyright © Denver Publishing Co.

This article posted November 29, 2000.

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