Living kidney donors push for better data on risks

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Lisa Giles didn't expect anything major to go wrong when she became a living organ donor to help her older brother. Doctors told her the surgery posed little risk and that she could live a long, healthy life with a single kidney.

But immediately after the February 2009 transplant, it was clear that something did go wrong. Severe headaches, excessive fatigue and an extreme drop in blood pressure eventually led to a diagnosis of adrenal insufficiency.

Giles, a Lake Forest businesswoman, said no one told her that surgeons would stop blood flow to her left adrenal gland during the five-hour operation in Cleveland. And she said no one told her that adrenal dysfunction was a risk of kidney donation. A pamphlet for prospective donors that the transplant center gave her made no mention of it.

"I felt like I was an informed decision-maker at the time," said Giles, who was 50 when she donated. "I asked a lot of questions, but I didn't ask all of the questions that I wish now that I knew."

Giles is part of a small but vocal group of living donors who are pushing for better data on the risks they face. While many people donate kidneys without serious problems — saving the lives of family members, friends, acquaintances and even strangers — these donors have struggled with problems such as kidney disease, diabetes, nerve damage, hernias, chronic pain and high blood pressure.

Yet most donors are not tracked over time, meaning no one knows exactly how many may have died or suffered other medical complications as a result of their generosity. Though 146 living donors were placed on the kidney waiting list between January 1996 and February 2007, that number is widely regarded as an underestimate of how many lost kidney function.

Unlike other surgical patients, living donors undergo a major operation solely to help someone else, facing risks without any possibility of medical benefit to themselves. Their unique situation creates a special vulnerability, and advocates say extra precautions should be taken to ensure their interests are protected.

"The miracle of transplantation, the need for donor organs and industry market expansion are not justifications to exploit donor altruism," said Jane Zill, a New Hampshire social worker who donated to her brother in 1991.

The most serious risks of donating a kidney are considered extremely low: a 0.04 percent risk of dying from the surgery and a 0.1 percent to 0.52 percent risk of developing kidney failure, according to United Network for Organ Sharing, the group that operates the nation's Organ Procurement and Transplantation Network.

Those statistics tell only part of the story, however. While surgical problems usually are evident soon after the operation, medical problems that arise from living with one kidney typically take years — often decades — to develop.

Unlike with kidney recipients, however, there is no national registry of living donors that would allow long-term tracking. And efforts to collect short-term data have yielded limited information, in large part because many transplant centers do not complete required follow-up forms or have lost contact with donors.

A 2009 consensus report of the OPTN/UNOS Living Donor Data Task Force concluded that data as currently collected are incomplete beyond about six weeks after the donation and, as a result, "useless for research or making conclusions about living donor safety."

In addition, centers increasingly are accepting people as donors who would not have been considered eligible years ago, including older people, obese people and those treated for high blood pressure, adding to questions about how donors will fare long-term.

Despite the gaps in information, many transplant experts say enough studies have been conducted to reassure prospective donors that the risks are minimal. They point to research by large centers that tracked donors over time — usually for about seven years.

"The safety of this far outweighs the risk," said Dr. Matthew Cooper, director of kidney transplantation at University of Maryland Medical Center. He said centers generally do a good job educating prospective donors about the possibility that something could go wrong.

"I think we provide donors with a wealth of information based upon on the data we have available to us, and, even beyond that, from our professional experiences," said Cooper, a member of the living donor committee. "We are obliged to tell donors of any risks that can occur at greater than 1 percent, although our effort has been to explain all potential risks."

Nearly six decades after the first transplant was performed using a kidney from a living donor, more than 100,000 people in the U.S. — more than 5,000 in Illinois — have given away a kidney while alive. Most donated to a family member or someone they knew.

After transplantation, every donor loses some kidney function, usually in the range of 25 percent to 35 percent. Even so, people living with a single kidney can live healthy lives, say transplant nephrologists.

Some studies suggest that donors are no more likely to develop kidney disease than the general population, but they also are strictly screened and thus considered a healthier group. African-American donors, however, do appear to be at increased risk.

When a donor does develop a medical issue, the consequences are not only physical. These people have stepped forward to make a personal sacrifice to help someone in need, and they may feel abandoned, betrayed or exploited. At the same time, many are reluctant to talk about their problems because they don't want the kidney recipient to feel guilty.

"To so many, if you're advocating for the respect and care of living donors, you must be against would-be recipients," said Cristy Wright, a living donor in Ohio.

The issue has driven a number of donors to create their own websites and organizations, speak out on Internet message boards and join government advisory groups. Wright runs a website called LivingDonor101.com.

Vicky Young, who serves on the UNOS living donor committee, suffered nerve damage and was diagnosed with chronic kidney disease four years after she donated to a friend.

"That's when I started not to regret the donation but to feel disenfranchised," said Young, who lives in Arizona. "I felt I wasn't informed, that there was no literature out there, that there no long-term studies telling me what to expect."

Young wrote a doctoral dissertation about living donation, interviewing a dozen donors. All expressed concerns about their long-term health and said they wished they had received more information about the emotional, social and financial aspects of donating.

The donors' efforts to raise awareness have not gone without notice.

"I think some donors have had outcomes that are disappointing to them," said Dr. Alan Leichtman, associate professor of nephrology at University of Michigan Transplant Center. "Some of that disappointment might be mitigated by better education and better preparation of the donors, educationally and psychologically."

Cooper said he worries that the donors' activism could cast living donation in a negative light.

"If (prospective) donors go looking for information from donors who have not have the best post-op care or who have had a complication, (they) might come away with a biased opinion about what living donation is all about," he said. "I think there should be some responsible sharing of information so that there is the potential for many more lives to be saved through living donation."

Unlike donation of organs from the deceased, living donation was not regulated until 2006. Among the safeguards are requirements that centers establish separate transplant teams for donors that include an independent donor advocate, said Dr. John Friedewald, a transplant nephrologist at Northwestern Memorial Hospital.

"The general message is that we think this is safe," Friedewald said. "We have fairly stringent medical and psychosocial criteria that we judge donors on."

A proposal being prepared by the living donor committee would require centers to collect and submit data on at least 90 percent of their donors. Centers failing to do so could lose Medicare funding, Cooper said. At present, a donor follow-up form is considered complete even if it says that the person was "lost to follow up."

Ideally, centers should follow their donors for decades so information gleaned from their experiences could be used to educate prospective donors and help individuals who develop problems, Leichtman said.

"If we're talking to a 20- or 30-year-old," he said, "we should be able to tell them what happens when they're 80."

Susie Putnam, who posts comments on the National Kidney Foundation's online message board for living donors, said she doesn't think donors who have problems regret having donated; they just wish they had known more ahead of time.

"For me the difference would have been that I would have made the choice to donate and felt fully informed. I would have donated, but I would feel less unsettled about my future," Putnam said.

"The question of whether one would donate or not seems like a separate issue from what is the responsibility of the medical community toward an individual who is making the decision to donate. I think they could do better."

dshelton@tribune.com

Twitter: deborahlshelton

Questions kidney donors can ask

•Do you have written information about living donation, including the hospital's policies?

•What health problems would rule me out? And what tests will be done to evaluate me medically?

•Which surgeon will remove my kidney? When will I meet with him or her?

•How many living donor nephrectomy procedures does the surgeon perform every year?

•What is the complication rate, and what post-surgical complications has the transplant center and/or the surgeon experienced? How many donors, if any, have died?

•How many of the transplant center's recipients have a five-year graft survival, how many for 20 years, and what is the patient survival rate?

•Will I have an independent donor advocate? What are that person's qualifications? And how will that person look out for me?

•Will a transplant staffer be available to assist me and answer questions after I leave the hospital? Are there any post-donation services available?

•How will the center handle any complications that I might have? And who pays for it?

•What are the transplant center's follow-up plans?

Copyright © 2014, Los Angeles Times
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