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.
Living kidney donors push for better data on risks
We've upgraded our reader commenting system. Learn more about the new features.
The Baltimore Sun encourages civil dialogue related to our stories; you must register and log-in to our site in order to participate. We reserve the right to remove any user and to delete comments that violate our Terms of Service. By commenting, you agree to these terms. Please flag inappropriate comments.