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Advocates fight for transplant rules, registry

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Rhonda and Danny Boone pose for an undated family photo at their home in North Carolina.

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(CNN) -- Danny Boone donated a section of his liver to his brother, a gift of life that led to his death.

Almost immediately after the surgery in 1999, Boone had complications, and over a three-week period surgeons operated five times. Boone died the day after he was put on a liver transplant list. He was 41.

His widow, Rhonda, said her husband should never have been allowed to donate part of his liver. "Danny had no idea what he was getting into," she said.

Doctors say Danny Boone had a condition that restricted blood flow to his liver. After he died, Rhonda sued the hospital and settled out of court. She didn't stop there and has since taken her fight to Capitol Hill.

"What I found out is that the transplant community is accountable to no one," said Boone, who now serves on the federal government's Advisory Committee on Organ Transplantation.

The federal law on organ transplants does not address live donation and by and large, the government does little to regulate it. It only requires that hospitals track living donors for two years. But research by the United Network for Organ Sharing, a nonprofit organization that helps facilitate organ transplants, showed that hospitals lose track of one-third of living donors in the first year.

According to the organization's web site, in 2005 an average of 77 people received organ donations each day-- about 25 percent of those surgeries involve living donors.

"I would not encourage people to be a living donor," said Joyce Somsak, a spokeswoman for the division of the federal government that oversees organ transplants, the Health Resources and Services Administration.

"There aren't a lot of long-term studies on living donation and what the impact is, what's the impact on people's health," she said.

Few cases tracked

The issue of living donors has sparked controversy within the medical community. Some doctors say they aren't doing enough to track the living donors and that the risks aren't fully known; others disagree, saying the medical community is working to improve the system.

Dr. Benedict Cosimi, a Harvard Medical School professor and chief of transplantation at Massachusetts General Hospital, said living donors are scrutinized and given as much care as transplant recipients.

"It's kind of irritating actually for someone to claim that transplant surgeons are just out there, trying to do as many cases as possible and ignoring the needs and the care of these individuals," he said.

Rhonda Boone and Vickie Hurewitz, who also lost her husband after he donated a part of his liver, want to see a national registry of donors and have been pushing lawmakers to take action. Some doctors say such a list would be too expensive and time-consuming.

But Hurewitz disagrees and says hospitals owe it to donors to do long-term follow up.

"It's an ethical thing to me. It's a principle," she said. "You don't ask people to do these surgeries and not take care of them. It's wrong."

Donna Luebke, a nurse and kidney donor who is on the board for the United Network for Organ Sharing, says she's horrified by the fact that no one systematically tracks organ donors long-term.

"We don't really know how risky this is," she said. "What if we actually knew that people who tend to do this after five years, 10 percent of them say they're sorry they did this?"

Psychological ramifications

The National Institutes of Health is working on a study of liver donors. Dr. Robert Weinrieb, a psychiatrist at the Hospital of the University of Pennsylvania, said researchers have seen depression in some donors for several reasons: some people have physical side effects; sometimes the recipient dies anyway; sometimes people don't deal well once the attention from others dissipates shortly after the surgery.

One of the leading authorities on the ethics of organ donations, Arthur Caplan of the University of Pennsylvania, says some transplant centers don't do psychological screenings before transplants.

"There are no written hard-and-fast rules as to how individuals should be worked up," he said.

To some, the risks are worth it. Kathleen Sampson, whose son, Connor, died almost three years ago after being run over by a neighbor's car, wanted to donate a kidney to a stranger as a way to ease the pain of her son's death.

Johns Hopkins Comprehensive Transplant Center did give her a psychological test before the operation, and she passed.

Five months after the surgery she says she feels healthy and good about her life. As is typical with donors who don't suffer complications, the hospital has followed up twice. While the hospital will keep up with the transplant recipient for the rest of his life, Sampson is now on her own.

"At first, everything revolved around the surgery and getting tested," she said. "And now it is just over, completely over. I thought it was a little bit strange."

"CNN Presents" teamed up with Deborah Shelton of the St. Louis Post-Dispatch and the Center for Investigative Reporting to produce "Body Parts."

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