The strangest thing about Ken Schuler's recent 10-hour surgery was not that he was in perfect health or even that doctors removed half his liver for transplantation into a desperately ill woman.
It was that Schuler had never met the woman until 20 days before.
Schuler, 46, of Linville, Va., first heard Deborah Parker's name on the local television news, as her father pleaded that she needed money -- and a donor -- for a lifesaving liver transplant. What caught Schuler's attention was her blood type: B-positive. As a veteran blood donor, he knew that was also his.
"I just put myself in his shoes," recalled Schuler, who has a 19-year-old daughter. "I looked at my wife and said, `I'd do that in a heartbeat.'"
Schuler got in touch with Parker's family through the TV station, and the following week he began four days of screening tests at the transplant clinic at Virginia Commonwealth University's Medical College of Virginia Hospitals in Richmond. After a blood test, he came back to the waiting room and checked in at the counter, spelling his name aloud for the nurse. A moment later a woman tapped him on the shoulder and said, "Are you Ken?"
It was Deborah Parker.
"She gave me a hug like I'll never get again in my life," Schuler said.
In a double operation at MCV Hospitals on April 19, surgeons removed about half of Schuler's liver and transplanted it into Parker, 39, of Virginia Beach. Both patients recovered well, and doctors say both the transplanted liver and the half that remained inside Schuler have grown back to full size.
It is believed to be the first transplant from a living donor with no prior relationship to the recipient.
Ken Schuler is perhaps the most extreme example of an emerging trend in organ transplants. In transplantation's evolving lingo, he is a LURD--a living, unrelated donor.
The growing use of living donors, related or unrelated, is "a paradigm shift" in organ transplantation, said Jimmy A. Light, director of transplant services at Washington Hospital Center.
The vast majority of organ transplants have come from cadavers--typically a person cut down in the prime of life by a car crash, gunfire or other trauma. But last year, 43 percent of kidney donors were alive, the highest percentage since the early days of organ transplantation.
The first living donors were genetically matched family members who gave up a kidney to a loved one. Gradually the live donor pool was broadened to include genetically unrelated donors within a family--spouses, adoptive parents or in-laws--and, eventually, the "emotionally related": friends, co-workers, neighbors or members of the same religious congregation.
"We went from a genetic relationship to a family relationship to a community relationship," said Jeffrey Kahn, director of the Center for Biomedical Ethics at the University of Minnesota. "Now we're talking about letting this happen between people who don't even know each other."
While the numbers are highest in kidney transplantation, live donation is also possible for other organs, including the liver, lung, pancreas and intestine. It is even possible for a living person to donate a heart. In that startling scenario, known as a "domino transplant," a person needing a lung transplant gives up a healthy heart to another patient in return for a heart-lung transplant from a cadaver. Thirty-nine people have donated a heart in this way.
The number of living-donor kidney transplants has more than doubled during the past decade, according to the United Network for Organ Sharing (UNOS), which allocates organs through a national registry of potential donors and recipients. The sharpest increase was in genetically unrelated donors. Transplants between spouses jumped sevenfold, and transplants from other "emotionally related" donors, such as friends or co-workers, more than sixfold.
Half of the kidney transplants this year at the University of Maryland Medical Center in Baltimore--one of the nation's busiest transplant centers--have come from live donors. About one-third of the kidney transplants at Inova Fairfax Hospital are from living donors. Approximately 30 percent of the live donors at both centers are unrelated to the recipient.
At the Washington Hospital Center, which performs more kidney transplants than any other hospital in the Washington area, 46 percent of the kidney transplants during the past five years have been from living donors. Nearly one-quarter of the live-donor transplants now come from unrelated donors.
An increasingly available new technique called laparoscopic surgery has made kidney donation less painful and less disfiguring, with a lower risk of surgical complications. The kidney is removed through a much smaller incision--two or three inches long--and donors often leave the hospital after a day or two.
The six Washington area kidney transplant centers are exploring innovative ways to encourage live organ donation. One would give a transplant patient priority on the waiting list for a cadaver kidney if a non-matching relative makes a live donation to the general pool. (See "Transplant Centers Seek More Kidney Donors," Page 16.)
The first living, unrelated kidney transplant at Washington Hospital Center was done "somewhat unintentionally" in 1988, Light recalled. The night before a scheduled father-to-son transplant, doctors discovered that the man was not the biological father of the boy. The surgical team went ahead with the transplant, which was successful.
First, Do No Harm
The main impetus for living donor transplants is the widening gap between supply and demand for transplantable organs. About 12,000 Americans received kidney transplants last year, but far more--nearly 42,000--remain on waiting lists around the nation. About 2,300 people died last year while on the waiting list for a kidney, and more than 2,500 died while waiting for other organs.
But live organ donation also challenges one of medicine's hallowed principles: First, do no harm.
Since the first kidney transplant--between identical twins--was performed in 1954 at Boston's Peter Bent Brigham Hospital, the ethics of subjecting live donors to medical risk has been fiercely debated.
"Thus, for the first time in the history of medicine," the hospital's surgeon-in-chief noted 35 years ago, "a procedure is being adopted in which a perfectly healthy person is injured permanently in order to improve the well-being of another."
That ethical misgiving is compounded today by the trend toward living donors who are not related to the recipient.
"When you get down to the nitty-gritty," said bioethicist Kahn, "it's about how much risk we let people take when it's for the good of somebody else."
The main danger for the donor is the standard risk of undergoing major surgery: possible bleeding, infection or complications from anesthesia. The risk of dying is estimated at about 3 out of 10,000.
In the early days of transplant surgery, it was assumed that a genetic match between donor and recipient was critical--to keep the recipient's immune system from rejecting the donated organ as "foreign." But with the arrival of powerful anti-rejection drugs in the 1980s, success rates climbed, and centers began to try transplants from living donors who were not genetically matched.
"Lo and behold, the results were superb," said Arthur Matas, a kidney transplant surgeon at the University of Minnesota medical center, which has done more living donor transplants than any other center in the world. "It sort of put the kibosh on the related-donor theory."
One reason why live-donor transplants have modestly higher success rates than those from cadavers is that the living donor is by definition extremely healthy and carefully screened. Also, the organ's out-of-body or "cold storage time" is measured in minutes instead of hours.
Instead of being packed in ice and shipped to another hospital, perhaps across the country, the donated organ is removed from the donor and carried to an adjacent operating room where a second surgical team is ready to transplant it into the recipient.
That's what happened during the Schuler-Parker transplant in Richmond. The donor operation took about 10 hours, and the recipient operation about seven hours. The right lobe of Schuler's liver that was transplanted into Parker weighed about 2.4 pounds--more than the entire scarred, shriveled organ that was removed from her.
About 25 living-donor liver transplants between adults have been done at the Medical College of Virginia, said Amadeo Marcos, director of MCV's living, related transplant program and a member of the surgical team that performed the Schuler-Parker transplant. The donor's remaining half-liver grows back to full size within 14 days, he said.
Nine of the living donor liver transplants at MCV have been between people who are not genetically related: four between spouses, four between close friends and the "stranger to stranger" Schuler-Parker transplant.
Marcos gets inquiries "all the time" from people who want to find out how they might donate part of their liver, even to a stranger. In a recent week, he had four such calls, plus an e-mail from a 55-year-old man in North Carolina offering half his liver for transplantation to a stranger.
"Donors were not part of my job when they were dead," said Mary Ellen Olbrisch, a clinical psychologist who evaluates all prospective living-organ donors at MCV. "There's no guidebook out there for this."
" 'Thank You' Is Not Enough"
When Ken Schuler told friends he was giving up half his liver to a stranger, some questioned his judgment.
"You could die!" they reminded him. His standard answer: "I could die walking across the street or get hit by lightning."
Psychologist Olbrisch asked Schuler what risk of dying he was willing to take. He said he didn't know. Ten percent? she asked. Yes, he said. Twenty percent? Yes.
"You get up around 50 percent, and I might think about it," he told her. "But whatever my risk of dying is, it's less than Deborah's. She's going to die 100 percent if she doesn't get a liver."
In evaluating live donors at MCV, Olbrisch makes sure the volunteer is fully aware of the risk and has no ulterior motive. She looks for second thoughts, possible conflicts of interest and signs of Munchausen's syndrome--a psychiatric disorder in which people fabricate excuses to be operated on. Schuler, for example, was given a battery of personality, intelligence and perception tests, including the Rorschach inkblot test.
"She tried just about every trick in the book to scare me off," said Schuler, a freelance artist. "I guess that's her job--to make sure I knew exactly what I'm doing. Believe me, I know what I'm doing."
The stakes are especially high for a liver donor, Olbrisch noted. While kidney donation requires major surgery, donating half a liver involves an even riskier operation. And unlike kidney donors, liver donors have no backup treatment--no dialysis--if their remaining organ fails.
"I want people to be donors," Olbrisch said. "But I don't want to make any mistakes and harm someone in the process by just waving them through."
In a follow-up survey of 524 living kidney donors at the University of Minnesota, only 4 percent said they had regrets. Questioned as long as nine years after their surgeries, the living donors reported having no more physical pain than the general population, and they scored higher than the general population on seven measures of physical and emotional health.
Most of the people who have volunteered to give part of their liver to a dying patient have been parents donating to a child, or spouses donating to a partner. But what prompts a healthy man to offer half his liver to someone he has never met?
"If I was standing on a riverbank and saw somebody drowning, I wouldn't care whether it was a stranger or somebody I knew," Schuler said. "I couldn't stand there and watch him drown."
Olbrisch described Schuler as "a volunteering type of person" who is "very attuned to other people's pain." He is also "emotion-driven," she said. "He has a feeling, and acts on it right away." (He describes himself as "pretty stubborn. Hardheaded, you might say.")
Schuler said his wife, Bettie, was 100 percent behind his decision. "I'm sure she's afraid," he said before the surgery. "If she were doing it, I'd be afraid. But she knows this is something I want to do."
Schuler and Parker were approved for their April 19 transplant on April 2. Before Parker had a chance to return the transplant clinic's phone message, Schuler called her and broke the news. "How about a date for the 19th?" he joked.
Two days later, the two families met for Easter dinner at Parker's parents' house in Stanley, Va. The Saturday before the Monday transplant, they gathered again for dinner at Hospitality House, the converted Richmond hotel where convalescing MCV patients and their families stay. Bettie Schuler brought homemade lasagna.
"It makes me feel better than anything I've ever done in my life," Schuler said after the successful transplant. By sitting up in his hospital bed, he could wave at Parker directly across the hall.
Parker, an airline reservations agent and mother of three, had liver failure from hepatitis C she contracted from a blood transfusion during gallbladder surgery in 1984.
"I'm numb," she said when asked how she felt about a stranger coming forward to offer her half his liver. "I don't know the right words. 'Thank you' is not enough."
Two days after the transplant, Parker was able to walk gingerly across the hall to Schuler's room. "Give me your hand," she said, and when he did she held it against the bulge in her side--from her new liver.
"He's got a sister now, and I've got another brother," Parker said. "We'll have this bond forever."
Trying Not to Play God
The pressure on transplant centers to use more living unrelated donors stems at least as much from the would-be donors as from potential recipients.
Initially, it came from husbands and wives saying, in effect: How can you tell me I can't be a donor when I'm watching my spouse deteriorate in front of me? Then it came from in-laws or co-workers or close friends.
"You have the two families in one room, and you can sense the closeness and the altruism," said Hans Sollinger, chairman of transplantation at the University of Wisconsin medical center, where a quarter of the 100 living-donor kidney transplants last year came from unrelated donors.
"I cannot play God with these people," Sollinger said. "They don't get any money, they know the risks, they are totally informed. Who am I to tell them they can't go forward?"
Now similar pressure is forcing transplant centers to consider expanding eligibility for live organ donation to include Samaritan donors who come forward with no specific recipient in mind.
"We've been approached, but it's a bit of a sticky wicket," said Joanne Sedlacek, director of the Inova Transplant Center at Fairfax Hospital. Aside from the delicate question of motivation, stranger-to-stranger transplants fall outside UNOS rules.
"For the person who comes in and wants to donate for the benefit of mankind, there's no process currently for determining who gets that kidney," Sedlacek said.
Cheryl Jacobs, a clinical social worker with the transplant team at the University of Minnesota, has received nearly 20 unsolicited calls this year from would-be "stranger donors" interested in donating a kidney to an unknown person.
"In the past we have discouraged such people," Jacobs said. "Now they are being more persistent--and we're taking them more seriously."
The willingness of people to donate organs to save another's life can lead to strange cases. An Oklahoma teenager donated his left lung in February to save the life of a distant cousin he had never met. Five years after donating bone marrow to a stranger with leukemia, a Wisconsin woman donated a kidney last month to the same person. A California man who gave one of his kidneys to his estranged daughter in 1996 while serving time in prison offered last December to donate his remaining kidney to her after the first transplant failed. The hospital rejected his offer.
"From an ethical standpoint, it's a morass," said Roger Evans, head of health services evaluation at the Mayo Clinic in Rochester, Minn., who has studied organ transplantation for more than 20 years. "This stuff really does get strange."
The current debate over how to handle stranger donors at the University of Minnesota was prompted in part by a transplant that never happened. The would-be recipient and the would-be donor both had grown up in Boys Town, the Nebraska home for troubled youths. They didn't meet until the prospective donor learned about the other man's plight through the Boys Town newsletter and called him, offering one of his kidneys.
The transplant was never tried, because the donor turned out to be medically unsuitable. "But it started us down the path of discussions," bioethicist Kahn said.
"We've approached this gingerly," transplant surgeon Matas said. He knows that the first live stranger-to-stranger transplant to be performed at the University of Minnesota will encourage more volunteer donors to come forward to help strangers, raising some vexing questions.
"What if the donor and the recipient don't want to meet each other?" Matas said. "What if they do want to meet each other? What if one does, and the other doesn't? Do you keep them on different floors [in the hospital]? Do you keep the families apart? Do you let the donor come up with his own criteria for choosing a recipient?"
And most important of all: How to ensure the donor is making an informed, voluntary and altruistic decision?
"Whether it's religion or wanting to turn over a new leaf--whatever the motivation is, we need to know it," social worker Jacobs said. "But we don't have a cookbook text to tell us about what's allowable and what's not--other than if the donor is getting paid, which is clearly forbidden."
Federal law forbids the buying or selling of organs, but the medical cost of organ donation is usually paid by the transplant recipient or that patient's insurance plan.
Allowing donations from people who are not genetically or emotionally related to the recipient will not solve the organ shortage, experts caution. But it might boost the supply of scarce organs by 10 percent or more, and each organ added to the supply is a lifesaver for the individual who receives it.
The overall impact on the shortage will be "fairly limited," predicted the Mayo Clinic's Evans.
"Not everybody is going to step up to the challenge of walking around with one kidney or one lung or part of a liver," Evans said. "We're not talking about donating blood."
Transplant Centers Seek More Kidney Donors
Six kidney transplant centers in the Washington area have joined forces to propose three novel ways of boosting organ donations from live donors.
The goal is to ease the worsening shortage of kidneys from cadavers, which are the main source of transplant organs. While the supply of donor kidneys has remained about the same in recent years, demand for kidney transplants continues to grow.
"The thing that's driving all of this is the long, long waiting list," said Jimmy A. Light, director of transplant services at Washington Hospital Center. The average wait for a cadaver kidney in the Washington area is 1,200 days, up from 1,000 a year ago, Light said.
The new procedures could go into effect by the end of this year, once the regulatory approvals and inter-hospital agreements are worked out, said Lori E. Brigham, executive director of the Washington Regional Transplant Consortium, the area's organ procurement agency. The six participants are Children's National Medical Center, Georgetown University Medical Center, Howard University Hospital, Inova Fairfax Hospital, Walter Reed Army Medical Center and Washington Hospital Center.
The WRTC's pilot project would allow "live donors" to give a kidney to a nonrelative in three ways that until now have not been possible:
* Living donor/cadaver exchange. This would give a transplant patient priority on the waiting list for a cadaver kidney if a nonmatching relative donated a kidney to the general pool. "In essence, this is a restricted gift," Light said. "I only give this kidney if my loved one gets a transplant." The exchange not only would benefit the person who needs a transplant but also would help others still waiting by removing one name from the list, he said.
* Paired exchange. Suppose a brother wants to donate a kidney to his brother but cannot because their blood types do not match. If an unmatched pair in the same predicament in a different family can be found, the two families may be able to work a swap. "If I can't give the organ to my brother," explained Jeffrey Kahn, director of the Center for Biomedical Ethics at the University of Minnesota, "I'll give it to your brother, and you give to my brother."
* Altruistic or Samaritan donation. An individual offers to donate one kidney to the pool of available organs, with no specific recipient in mind.
Of the three, transplant experts said, the living donor/cadaver exchange is expected to result in the most transplantable organs. Light predicted it may boost the supply by 10 percent or more.
The WRTC proposal is expected to be voted on this month by the board of the United Network for Organ Sharing, which allocates transplant organs nationally. The living donor/cadaver exchange and the altruistic donation require UNOS approval because they involve a waiver of UNOS rules governing allocation of cadaver organs.
"The first thing you want to do," Brigham said, "is make sure you're not disadvantaging anyone who's already waiting for a kidney."
Paired exchange does not require a waiver from UNOS rules, but it raises logistical questions that are still to be worked out--such as whether the paired operations would be done at the same hospital and, if so, which pair would choose the hospital. Also, the only way to ensure that no one backs out at the last minute is to schedule the donor and recipient operations simultaneously.
Otherwise, Kahn said, "you run the risk of one family saying: 'We've got our organ, now the deal is off.' " Yet the traditional anonymity between donor and recipient families becomes next to impossible when four surgeries--involving the two donors and the two recipients--are done at the same time in adjacent operating rooms.
The idea of paired kidney exchange has also been proposed by the New England Organ Bank, the University of Chicago and the University of Minnesota, but none has yet carried it out.
A task force headed by Robert M. Veatch, a medical ethicist at Georgetown University's Kennedy Institute of Ethics, studied the WRTC proposal for more than a year and concluded that it was feasible and ethically sound. The proposed exchanges and live donations can work as long as donors are thoroughly evaluated to rule out undue pressure from a recipient or suicidal motives, Veatch said.
"Historically, we've assumed that these people must have mental problems and we've turned them down," Veatch said of "stranger donors" who volunteer to donate a kidney to the general transplant pool. "Now we're more willing to think they could be rational and it might work out."
'We Cried a Little, Hugged a Little'
Nine years ago, Linda Cheatham learned she was heading into kidney failure from an irreversible hereditary disease. Only a transplant would save her from a lifetime of dialysis--or worse.
The chance of finding a matching donor in Cheatham's family was almost nil, because most of her relatives had the same ailment, polycystic kidney disease. (She would be the sixth family member to receive a transplant--along with her mother, her sister, her aunt and two cousins.)
Cheatham's doctors at the University of Wisconsin added her name to the national waiting list for a transplantable cadaver kidney.
In the meantime she received a telephone call from a close family friend, Robin Ward, who made a breathtaking offer: one of her kidneys.
Cheatham says her first reaction was: "Oh, my God, this is incredibly wonderful." Her second was: "Oh, my God, what if it doesn't work? I'd feel terrible if anything happened to Robin because of this."
They knew their blood types were compatible: Cheatham was A-positive, and Ward an O-type "universal donor." But what if something went horribly wrong anyway and the transplant failed? Would there be lifelong guilt? Recriminations? Damage to their friendship?
After initial tests showed a transplant was feasible, they sat on Cheatham's patio and talked all evening over a bottle of cabernet. "We cried a little, hugged a little," she recalls. "And in the end we decided: Now let's get this done."
"We both had some serious concerns," Ward says. She didn't want Cheatham to feel indebted forever in a way that could stifle their friendship. For her part, Cheatham didn't want Ward to feel in any way coerced.
"I wanted to be sure it would not change our relationship, because the relationship is what made it work," Ward says.
Cheatham, then 42 years old, was also naturally concerned about the risk that Ward, then 38, was taking on her behalf.
The transplant was done nine years ago at the University of Wisconsin. Both patients recovered fully and resumed active lives. Ward is a physical therapist in Columbia, Mo.; Cheatham runs an accounting practice out of her home in Alexandria.
The two have stayed close even though Cheatham moved to Virginia in 1992. They see each other several times a year, and talk by phone between visits. Every Aug. 9, to mark the anniversary of their transplant, they exchange congratulatory "rebirthday" cards, with what Cheatham calls "sweet weepy notes to each other."
"Someone doesn't give you a kidney and walk out of your life," Cheatham says. "Robin's in my will. She's my sister, as far as I'm concerned."
'We're Here to Help One Another'
Even though Paul Levine had been fighting off diabetes for more than 40 years, the doctor's warning after a routine physical a few years ago still hit him like "a sledgehammer blow."
Levine's kidneys, already damaged, would eventually fail completely. When they did, he would have to begin thrice-weekly dialysis treatments to do the blood-cleansing job his kidneys could no longer handle.
No live donor was available in Levine's family for a possible transplant. His wife, June, had lost one kidney herself. Their adopted children didn't match his blood type. His brother offered to donate but was ruled out for medical reasons.
"It's not something you go around bragging about," Levine says of his kidney failure. Yet he didn't keep it a secret, and close friends knew of his predicament. One of them, Eileen Harrington, approached Levine about a year ago and offered to give up one of her kidneys if it could keep him from going on dialysis.
The two had been friends for 30 years. They both had taught elementary school in Fairfax County. They lived a few houses apart.
"Let's get me tested," Levine recalls Harrington insisting after she broached her proposal.
"It was as simple--and as deep and complex--as that," he says. "Such a gracious gift--and brave. I get goose bumps every time I tell the story."
Levine remained on the waiting list for a transplantable kidney from a cadaver. But with the average wait exceeding three years and with his health already deteriorating, he had no assurance he would get a transplant in time.
Even after Levine and Harrington made their decision and Harrington passed the battery of medical and psychosocial tests to qualify as a donor, the transplant could not be scheduled right away. Doctors are unwilling to put a perfectly healthy donor such as Harrington through the risky surgery unless the recipient is in dire condition. Levine and Harrington had to wait eight more months--until he could no longer survive without dialysis or a transplant.
As his diseased kidneys began to shut down, Levine grew weak and lethargic, and his complexion turned a sickly grayish-yellow.
The transplant was done on Feb. 9 at Inova Fairfax Hospital. Harrington's left kidney was still warm when it was carried from her operating room to his and sewn into Levine's abdomen. While neither patient would describe the experience as pain-free, both have recuperated fully.
"For me, it was just a few weeks out of my life," says Harrington, 53. But knowing she helped save a dear friend's life is "a high" that she says she'll never relinquish.
Levine, 60, continues to monitor his blood-sugar levels and give himself insulin shots at least twice a day. He also takes two anti-rejection drugs.
"There's a love between our families," Harrington says. "We're here to help one another. The opportunity arose, and we took it."
TRANSPLANTS FROM LIVING DONORS
SOURCE: United Network for Organ Sharing
CAPTION: Ken Schuler and Deborah Parker converse just weeks after he gave her part of his liver to save her life.
CAPTION: Linda Cheatham says receiving a kidney from her friend Robin Ward strengthened their already close ties.
CAPTION: Marian Neal of Alexandria gave one of her kidneys last December to a 7-year-old neighbor, Terrance Varner, whose own kidneys had been damaged at birth. Since the transplant at Children's Hospital, Terrance has regained his health.
CAPTION: Eileen Harrington says knowing that her kidney helped save Paul Levine's life is a "high" she'll never relinquish.