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Living Organ Donors Often Oblivious to Risks They Run

August 10, 2003|Laura Meckler | Associated Press Writer

WASHINGTON — The transplant was drawing near, and Kimberly Tracy knew that she might die. She sat down to write her 2-year-old nephew a letter.

"I'm writing this letter to you now in case I can't tell you later," Tracy typed on her computer as she prepared to give him one of her kidneys. "Maybe something went wrong during the transplant or I became ill afterwards.... All I know is that I wanted to tell you how much I love you."

She slipped the pages inside the folder with her will and life insurance documents. Soon after, her healthy kidney was transplanted into her nephew's tiny, sick body.

Tracy, 45, a nurse from Dayton, Ohio, survived, as did her nephew. But it was hardly the no-big-deal operation that her doctors had promised. For months afterward, Tracy would vomit for no clear reason. She had abdominal cramps and shooting pelvic pain.

Yet complications like Tracy's are seldom reported or talked about, even as the number of living donors is skyrocketing. Increasingly, patients desperate for transplants are turning to families, friends, even acquaintances or co-workers for vitally needed organs.

Living donors now outnumber the traditional source of organs -- cadavers -- with 6,613 living donors last year, more than triple the number in 1990, according to the United Network for Organ Sharing, which runs the nation's transplant system.

Few living donors die, and there are no reliable statistics about their surgical complications. But existing data suggest that as many as one in three liver donors, for example, face such complications as more surgery, hospitalization and extended recovery periods.

Transplant programs don't always provide donors with detailed information about the risks. And there's no central place where donors can go for unbiased information -- not just about obvious side effects, but about time lost from work, pain, discomfort and expenses.

Moreover, the organ donation system has its own built-in contradictions. A physician's guiding principle instructs to do no harm, yet living donation removes an organ from a healthy person who will derive no medical benefit from the procedure.

Most donors have no regrets; many have only minimal pain.

"I used the morphine pump for the first day. Then I didn't need it anymore," said Ellen Souviney, 48, of Brunswick, Maine, who gave a kidney to her personal trainer. "I didn't even need aspirin after that."

Others are less satisfied. Tracy has begun an informal support network for living donors and is creating a Web site to help educate potential donors. She, too, has no regrets, but says: "My main concern is living organ donations will soon get a bad name if things aren't changed in the medical system."

Many in the field, including a federal advisory panel, are calling for fundamental change. Two ideas have emerged: a national registry to keep track of donors and their conditions after a transplant, and independent donor advocates at every transplant hospital who can dispassionately explain the risks.

The rise in living donations makes change all the more crucial, said Gregory Pence, a bioethicist at the University of Alabama. He and others worry that living donation has become so common that family and friends feel intense pressure to donate if they are a medical match.

"You really have to ask, 'Do people know what they're getting in for?' " he said. "No one really knows."

Moreover, each hospital has its own criteria for approving donors, with no standard guidelines.

In 1999, four Canadian hospitals refused to let a housekeeper donate a kidney to her ill boss, a wealthy Toronto developer, because of concerns that anyone donating to an employer might be under pressure to do so. But the developer turned to the Mayo Clinic in Rochester, Minn., which concluded that the housekeeper was acting out of compassion and performed the surgery.

Donor deaths are rare, although sometimes well publicized -- such as the reporter who died in New York in 2002 after giving a part of his liver to his brother. His death prompted a New York advisory committee to recommend what would be the strictest guidelines in the country for living donations, including a state registry of donors and restrictions on who can donate.

Nationally, the transplant network has identified 28 donor deaths to date, including five that were definitively linked to the donation. And as of 2002, 56 kidney donors later needed a kidney transplant themselves.

As for less-than-fatal complications, the data are thin. The National Institutes of Health is set to begin a study of liver donors later this year. A limited registry of kidney donors has enrolled about 250 people so far, but the results have not been published or shared with any donors or doctors.

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