Apr. 29--Debi Bobka doesn't meet the medical criteria to be included on the organ transplant list, but is convinced it's only a matter of time before her diseased liver fails. So she is seeking a live donor -- even if it means appealing to strangers for help.
Bobka, 53, of Schaumburg, posted a message on livingdonorsonline.org that begins: "In need of a liver to save my life."
She acknowledges feeling uneasy about her public appeal, an increasingly common and controversial practice at a time when the need for transplants far exceeds the availability of organs from deceased donors. Bobka joins many others who hunt for donors out of fear that their time is running short.
"How do you ask people to give you a piece of their liver?" asked Bobka, who was diagnosed in March 2009 with primary biliary cirrhosis, an autoimmune disease that has led to internal bleeding.
Medical advances in organ transplantation have extended lives that a few years ago would have been cut short. Yet public solicitation for organs raises a host of medical, ethical and social concerns about how to fairly allocate organs in an era of scarcity, and how to balance the benefits to the sick recipient against the risks to healthy volunteers who donate.
People increasingly are using the Internet, word of mouth and even community bulletin boards to find living donors, even as medical experts remain divided on whether they should be allowed to go outside the transplant system. Transplant centers vary widely in their policies. Some prohibit transplants from donors who are not friends or family. Others accept such donors, widely known as good Samaritan or altruistic donors.
A national committee that examined public solicitation several years ago was unable to come to a consensus on how transplant centers should handle the issue, said Joel Newman, spokesman for United Network for Organ Sharing, which oversees the nation's transplant system.
"We couldn't say which relationships were or were not appropriate," Newman said. "So we put the emphasis on making sure the donor has good and sufficient information about the risks of donation and also about the options available to the patient. ... We don't take a position on whether it's right to solicit or not."
More than 107,000 people are on a transplant waiting list in the United States, with about 16,000 needing a liver transplant, according to UNOS. That number is expected to grow as a result of the nation's aging population and an increase in the incidence of hepatitis C.
Last year, livers were retrieved from about 6,700 deceased donors and about 220 living donors, according to the most recently available data.
More people are soliciting the public for donors because "the reality is that so many people die waiting for a transplant or become ill," said Dave Bosch, spokesman for the Gift of Hope, the Itasca-based organ procurement organization for the region that includes Illinois and four other states.
Unlike patients awaiting kidney transplants, liver patients do not have the option of going on dialysis, which keeps them alive while they wait. Their frustration and sense of helplessness is evident in their pleas, which aim to touch -- and sway -- the hearts of strangers.
At a smoothie store in Vernon Hills, for instance, a flier pleads for help for a friend, "Julie," who needs a liver transplant. "Julie's situation can change dramatically if we could introduce her to someone that is willing to help her predicament," the flier reads.
Some doctors frown upon this form of solicitation.
"I think (the friend) who put this ad up is probably concerned and desperate," said Dr. Sonu Dhillon, a hepatologist at Rush University Medical Center. "But you can't just walk off a train and say, 'Take my liver.' Unlike a kidney, you can't just give up your liver. You are putting people at risk."
Liver transplantation can be a risky surgery for the donor. In a typical adult donation, about 60 percent of the liver is removed and transplanted. The liver, the only organ that can regenerate after a section is surgically removed, typically grows back to nearly its original size. But if too much is removed or something goes wrong, the donor is at risk of liver failure and death.
The federal Advisory Committee on Organ Transplantation estimates the death rate at 2 in 1,000 donors, although some studies have reported a risk as high as 1 in 100. The advisory committee puts the risk of complications, minor to major, at between 15 percent and 30 percent. Some studies have reported a complication rate significantly higher.
Some donor complications require additional surgery, extended hospitalization or prolonged recovery.
Historically, transplant centers have been more willing to accept living liver donors who are biologically or socially related, such as friends and family.
Medical ethicist Arthur Caplan said the risks, benefits and complications of kidney donation are better understood, so he feels more comfortable with the idea of strangers donating. But liver transplantation with live donors is a different case, he said.
"It's a caveat emptor world out there, and it has not been regulated," said Caplan, director of the Center for Bioethics at the University of Pennsylvania. "The transplant field continues to push to get more organs, but it isn't protecting donor interests or setting out standards for screening prospective donors or doing the job of explaining to people who have organ failure when it's time to take desperate steps."
Public appeals add another layer of complexity -- and concern -- for patients and prospective donors alike.
"Internet organ solicitation is on par with Internet dating," Caplan said. "He may say he is a 40-year-old with a full head of hair and a good job, but look out when he walks in the door."
Some medical experts worry about donors demanding or being offered money, which is illegal.
Julie Avina, 34, of Indian Head Park, said she does not regret donating the right lobe of her liver to her father last month in Detroit, but agrees that it was not easy. She was hospitalized for nine days instead of the expected five because of a complication.
Three days after she was discharged, her 6-inch incision became infected, and she had to be re-admitted to the hospital for another week.
"Psychologically, it is very stressful," said Avina, who returned to Illinois last week. "It gets a little lonely. You are not home. You are not able to be yourself. The pain, I think it all just takes over. I have my spots out of the blue where I start bawling in front of somebody."
Recovering now, she believes that at least half of her donated liver tissue has regenerated. Her father, who had a genetic condition that interferes with the body's ability to break down iron, was discharged from the hospital Wednesday and sent to rehab, she said.
Jim Frey, 41, an engineer who lives in North Carolina, learned about the need for donors when a friend became sick. He would like to donate a portion of his liver to someone, but said he has found few transplant centers that allow it. Frey, who has posted messages on livingdonorsonline.org, said he can't help the friend because their blood does not match, but he believes that live liver donations should be encouraged.
"It seems odd to me that only people who are in horrible physical conditions are on the list to get a transplant," he said. "Their lives are substantially compromised. They are looking at a very short time span in terms of when they get one."
Dr. Steven Flamm, medical director for liver transplantation at Northwestern Memorial Hospital, said he expects Bobka's disease to progress, but her liver is functioning well and her complications are not severe enough to warrant a transplant. Even if she found a living donor tomorrow, he said, he would refuse to do the surgery because of the risks to her.
"It is my guess that someday she might need a new liver, but now is not the time," Flamm said. "If a good Samaritan donor came in, we would evaluate that just like everybody else. But it is not something we encourage or push."
Bobka said her daughter, a potential donor who matched her O-negative blood type, was ruled out because of her history as a cancer patient. She admits she is relieved that her own family members don't qualify.
"I think about the donor, their family, what if they lost this person," she said. "People become desperate. It's very scary."
lblack@tribune.com
dshelton@tribune.com
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