Giving Of Themselves

Anonymous Transplant Donors Are Stepping Forward To Give

By Benedict Carey

Los Angeles Times

They are the sort of people who volunteer at the soup kitchen and don't expect to be congratulated. Who donate their blood and time and money and don't need any thanks. People who don't want a movie deal or even a mention in the local newspaper.

And now they are stepping forward to give a part of themselves - literally - to someone who needs it more.

"To do something unconditional, that's what I was looking for," says a New England schoolteacher who this year became one of the first people in the United States to voluntarily donate an organ - one of his kidneys - to a complete stranger.

He wants to remain anonymous, he says, "because it was meant to be an anonymous gift. It's done, and I honestly don't want to hear from the recipient."

Until very recently, transplant centers turned away such people on principle. Doing surgery on a healthy person violates a doctor's professional oath: First, do no harm. "And there was also the concern that these people might be crazy," says Dr. Alan Wilkinson, director of the kidney transplant program at the University of California at Los Angeles School of Medicine. "So we were very reluctant to take them."

But the reluctance is dissolving fast. The University of Minnesota established a program for nondirected (i.e., anonymous) kidney donation last year and since has evaluated about 20 donors and performed seven transplants, including the schoolteacher's. The Washington Regional Transplantation Consortium, which coordinates transplants in the Washington, D.C., area, now has several people who are willing to donate anonymously.

Waiting lists for organs swell by the thousands each year, and the supply from cadavers has reached a plateau. In 1999, for instance, fewer than a third of the 44,000 people waiting for a kidney got one, and 2,969 died waiting.

At the same time, doctors have become better at performing and managing transplants.

For kidney transplantation, the most common procedure, they now routinely take organs from genetically unrelated donors, such as spouses and friends. Once rare, such living unrelated donors now account for about 15 percent of kidney transplants from living donors.

And it's now clear that the people who want to donate a kidney anonymously are usually certifiably sane. They are serious. "Stable, upstanding, usually well-educated people," says Cheryl Jacobs, a social worker in the Minnesota program, "who have a history of giving, who donate blood, who genuinely want to help."

The transplant community has established clear rules determining who gets each organ retrieved from a cadaver. Not so for good Samaritan organs. The field is wide open.

"We had better be very, very cautious with this group of donors and make sure they are coming to us for purely altruistic reasons," says Dr. John Curtis, medical director of the kidney transplant program at the University of Alabama-Birmingham.

Got Idea From TV

A television program is what got the schoolteacher thinking about donating. A Vietnam veteran, he had spent years as a Baptist preacher trying to make the world right. But all that praise and giving thanks ultimately got in the way of his only desire, he says, "just to do the right thing, and move on."

Now, in the summer of his 62nd year, here was a TV program showing how a transplant gives people with kidney disease new life; how it frees them from continuous hospital visits to have their blood filtered artificially and painstakingly, during what's called dialysis. The show also mentioned that kidneys from living donors usually last longer than those from cadavers, causing fewer side effects.

"That was crucial for me. I thought, 'Why wait until I'm dead? I'd rather do it now, when I'm healthy. ... When I'm alive.'"

He did some research on the subject first. He learned that 80 percent to 90 percent of kidney recipients live at least five years; and that because of improved drug therapies that help the body accept new tissue, the organ may function fine for well over 20 years.

He also learned that about three in 10,000 who donate a kidney die as a result of the operation and that between 1 percent and 10 percent suffer side effects, such as swelling around the scar.

He could live with that. He could also live with just one kidney. As far as doctors can tell, kidney donors suffer no long-term consequences from being short one organ.

Turned Down

So the teacher called most of the major transplant centers in New England, and they all turned him down. Anonymous donation wasn't unheard of; several operations had been done, at a handful of hospitals, but he had no luck - until someone gave him the phone number of Catherine Garvey.

Garvey is the transplant coordinator at the Minnesota center, which recently had set up the country's first program established to evaluate altruistic donors. She told him the same thing she has told the other 100 or so would-be altruists who have called. "You have to make two trips here - one to be evaluated and another for the operation," she says. "That is, if you check out."

He checked out physically: no heart disease or cancer; no detectable viral infections, such as HIV, hepatitis B or C; no evidence of alcoholism or diabetes.

Then came the mental exam. A psychological evaluation is central to the Minnesota program, as it should be in any situation with an altruistic donor, say medical ethicists.

Personality Profile

The assessment at the University of Minnesota includes a personality profile and an interview touching on the person's background, education, relationships and anything else that seems relevant.

"We have to make sure of two things" about anyone, says Jacobs, who helps evaluate all of the program's donors, "first, that this person is competent to make this decision; and second, that they are doing it for truly altruistic reasons, and not some other, personal reasons."

Like money, for one, because selling human body parts is against the law. Or for publicity. Or even redemption - of some emotional pain, some regret. "We have to be careful to make sure the person isn't seriously depressed," says Jacobs.

The Samaritan from New England sailed through. He did not need money, his head was screwed on just fine and he had no desire for attention. After a couple of months of waiting, there he was, back at the university hospital, being prepped for the operation.

The operation lasted about four hours. A kidney was removed and rushed across the hospital to be grafted immediately into its new home.

And the pain? "Brutal. The first 24 hours, brutal. I had one of these IVs where you can give yourself drugs any time you want by pushing a button. I used the thing."

Back At Work

After a couple of days, he was back home, and about a week later - 13 days after the operation - he was back at work. That is very unusual, say transplant nurses; most people need at least three weeks to recover.

"But I was fine. Tired during that first week back, but then fine."

The recipient is doing well. "That's the one thing I wanted to know about the person, and they did tell me that."

There certainly is a desperate need for organs. Those whose liver or heart is failing face death, after all, and a transplant is the only hope they have. That's why guidelines for distributing the organs are so important.

The United Network for Organ Sharing, in Richmond, Va., makes sure that organs from cadavers are distributed on a point system, according to tissue matching (whose body is most likely to accept the organ) and time on the list (who has been waiting longest). The lists are regional: An organ collected in Los Angeles usually goes to the next matched person on the whole Southern California list.

But because anonymous donors are an entirely new group, there are no rules yet for sharing their organs. That means transplant centers could compete to lure such donors.

Jockeying Begins

"It certainly pays off," says Dr. Norman Levinsky, a professor of medicine at Boston University. "You get organs for your own patients, on your list, and the more of these organs you get, the more you can build the reputation of your organization."

The jockeying already has started. The University of Maryland's transplant program recently ran a large ad in the Wall Street Journal picturing two kidneys. It read, "There's a reason why you have two kidneys. You need one, and so does someone else." Doctors there already have done one anonymous procedure.

The temptation to reimburse donors will be strong, Levinsky says. The operation itself is paid for by the recipient or the recipient's insurance. But there are other costs. The University of Minnesota offers some financial aid to cover expenses such as food and transportation, for instance. How long, asks Levinsky, before institutions are offering larger payouts for "expenses"?

"Once the competition starts," he says, "you could quickly have a race to the bottom."

Sharing Network

That's a race that most transplant surgeons would rather not run, but to avoid it, says Levinsky, they're going to have to set up organ-sharing networks that do not pit one institution against another.

The Washington Regional Transplantation Consortium's registry of living donors, for example, serves all six major transplant centers in the D.C. metropolitan area. The organs are parceled out according to the same guidelines as cadaver organs.

"We worked long and hard to get these centers to agree on this," says Lori Brigham, the consortium's executive director, "but it's really the only way to distribute organs from anonymous donors fairly."

This article posted November 2, 2000.