Kelly Nolan donated a kidney to a neighbor girl in 2009, helping sickly toddler Mira Raether grow into a healthy, rambunctious fourth grader today.
But Nolan’s life hasn’t been so rosy. She has been in constant pain since her surgery, and transplant doctors have been reluctant to help, she said.
The pain beneath Nolan’s eight-inch scar sometimes shoots down her hip and leg, she said. It has caused depression, left her sleepless some nights, made it difficult to do her desk job and contributed to her divorce four years ago.
“There have been days I just cried because I couldn’t function,” said Nolan, 40, a mother of two from Milwaukee whose operation was at Froedtert Hospital.
Living organ donors, who undergo major surgery with no direct benefit to themselves, usually have few if any complications, studies say. But the selfless act of giving away a kidney or part of a liver doesn’t always have a fairy-tale ending.
Transplant centers, which make money doing transplants, sometimes fail to adequately inform living donors of the risks or properly monitor and care for them after surgery, critics say.
“You shouldn’t put people under anesthesia, take their kidneys out and tell them, ‘We’re not sure what the risks are,’ ” said Dr. Lainie Friedman Ross, a pediatrician and bioethicist at the University of Chicago.
Ross has called for a national registry of living donors to better track long-term problems. Currently, donors are typically followed no more than two years.
“Transplant centers have some definite conflicts of interest,” said Cristy Wright, of Akron, Ohio, a kidney donor who runs the website Living Donor 101. “They’re not going to be the best arbiters of their own moral compass.”
Nationwide last year, 32 percent of 17,109 kidney transplants and 4 percent of 6,729 liver transplants were from living donors.
Two recent studies found that kidney donors, by having only one remaining kidney, face an increased risk of kidney disease, which can cause them to need transplants themselves.
One study, from Norway, found an 11-times higher risk of end-stage kidney disease for donors compared to similarly healthy non-donors. The other, from Johns Hopkins University in Baltimore, said the risk was eight times greater.
Still, the chance of donors developing the condition was less than 1 percent, three times lower than in the general population. That is because living donors are healthier than most people.
Other research on kidney donors points to increased risks of gout, a complex form of arthritis, and preeclampsia or high blood pressure during pregnancy. Pain is considered a short-term risk.
The United Network for Organ Sharing, which runs the nation’s transplant system, started requiring independent living donor advocates to assist donors before and after surgery in 2007. UNOS recently beefed up requirements for informed consent and follow-up.
"Those things have been major improvements," said Mary Amanda Dew, a psychologist at the University of Pittsburgh and chairwoman of the UNOS living donor committee. "They're critical safeguards, so it is more likely a person will enter into this understanding what they're getting into."
But the increased risk of kidney disease, along with tragedies such as the death of a 368-pound Florida man with diabetes during kidney donation surgery this year, highlight concerns about how well doctors inform and select donors.
“There’s a bit of tension between what transplant providers believe is important to disclose to potential donors and what potential donors need to know,” said Elisa Gordon, a bioethicist at Northwestern University’s Feinberg School of Medicine in Chicago.
Paula Moylan, 60, of Brookfield, gave part of her liver to a friend in 2004 at UW Hospital, one of the country’s largest transplant centers.
Moylan has abdominal pain she attributes to her donation surgery. UW Hospital, which featured her in a brochure about living liver donation, says her pain isn't from the surgery.
Moylan said she didn’t have pain before, and doctors ruled out other causes. The pain makes it feel like a concrete block is inside of her, she said.
“What are the odds that it’s the transplant’s fault? Pretty darn good,” Moylan said. “It’s not something I can live with day to day.”
Risks of donation
The potential dangers of living organ donation were highlighted in April when 40-year-old John Donaldson, of Cape Coral, Florida, died while donating a kidney to his father at Gulf Coast Medical Center in Fort Myers.
Donaldson, who was morbidly obese and had diabetes, bled to death after an artery was improperly sealed, an autopsy found. The transplant center hasn’t resumed living donor transplants.
Erie County Medical Center, in Buffalo, New York, shut down its living donor transplant program last year for more than three months after a patient died from a drug overdose within six months after donating a kidney.
Studies say the risk of death from kidney donation is 3 in 10,000. For liver donation, it's 15 to 50 in 10,000.
The risk of major complications from kidney donation is 2 in 1,000. For liver donation, it’s 11 in 1,000, according to a study in 2012.
About 18 percent of kidney donors and 40 percent of liver donors have some type of complication, studies say.
Of roughly 92,600 living kidney donors since 1999, 28 died from medical causes and 17 died from suicide or drug overdoses within two years after surgery, according to a UNOS report this year. At least 46 needed kidney transplants.
Among about 4,500 living liver donors since 1999, four died from medical causes and three died from suicide or overdoses within two years. At least seven needed liver transplants.
UW Hospital has had more than 3,100 living kidney donors, including more than 1,600 since 1999. None have died from donation-related medical causes, suicides or drug overdoses within two years, hospital officials said. Five needed kidney transplants.
Of 23 living liver donors at UW Hospital, none died within two years or needed liver transplants, officials said.
'Living donors deserve better'
The data likely underestimate the problems because some donors aren't monitored closely and most aren't followed long-term, critics say.
Transplant centers properly tracked only 19.1 percent of living kidney donors in 2007, according to UNOS. A policy requiring better surveillance and longer follow-up improved the figure to 66.5 percent of donors in 2013.
Data many years after donation are scarce. The recent studies showing a higher risk of kidney failure looked at donors about 15 years or less after surgery, possibly too early to detect problems that can take decades to develop.
“They can’t say they have long-term data,” said Donna Luebke, a nurse practitioner and kidney donor from near Cleveland, Ohio, who has served on the UNOS board. “Long-term is 20, 30 or 40 years.”
Ross, from the University of Chicago, is studying 150 kidney donors who developed kidney failure to see if particular factors put them at greater risk.
She said a national registry of living donors is needed to better identify complications and risk factors.
“Living donors deserve better,” Ross wrote in a forum of The Hastings Center, a bioethics institute. “The lack of support for a prospective large-scale living donor registry is morally inexcusable.”
Dew, of the UNOS living donor committee, said funding for a registry would have to come from the government. The Health Resources and Services Administration is looking at starting a registry, spokeswoman Judy Andrews said.
Donor helpers work for transplant centers
Independent living donor advocates help donors assess risks, evaluate pressures to donate and have a smooth donation process, said Rebecca Hays, an independent living donor advocate and transplant social worker at UW Hospital.
To prevent conflicts of interest, the advocates are supposed to avoid working with transplant recipients. But most work for transplant centers or their affiliated hospitals, said Hays, a national leader in the field. Some are external consultants, many of them chaplains, she said.
Critics say advocates can’t truly act on behalf of donors if their salary is tied to transplant profits.
“It reeks of conflict of interest if the person is employed by the transplant center,” Luebke said.
Hays, who is paid by UW Hospital’s transplant program, said she has one supervisor in the transplant center and another in the hospital’s social services department to separate competing interests.
Hays acknowledged potential problems with her setup but said the alternative — part-time consultants who typically have little background in transplants — also has drawbacks.
“The concern about those people is their limited knowledge and their status as a part-timer,” she said.
Recent surveys say 23 percent of living donors don’t understand the testing and surgical procedures, 34 percent of living kidney donors had a more painful recovery than expected and 67 percent of living liver donors wish they had been given more information about risks.
The findings suggest many donors don't receive enough information or don't get it in the best way, said Gordon, of Northwestern.
“We can do better,” she said.
Helping others, coping with complications
John Wheeler, 60, of Middleton, donated a kidney to his 58-year-old sister from Indiana at UW Hospital last year.
Wheeler had an infection near his incision after surgery and now has higher levels of chemical waste in his blood, a possible sign of future kidney problems.
But he said the complications are nothing compared to the benefits his sister received. Instead of withering away on dialysis, she is feeling well and traveling the world, he said.
“If this means my sister gets to live another 25 years, but it shaves five years off my life, I’ll take it," Wheeler said.
Moylan said she doesn’t remember anyone telling her she might have long-term pain after her liver donation.
A mother of five, Moylan was living in the Wausau area in the late 1990s when she decided to become a firefighter to show she was willing to risk her life to save others.
When a friend needed a liver, Moylan put her pledge to the test in another way.
After surgery removed about half of her liver, Moylan had significant abdominal pain for several months, she said. The pain subsided, allowing her to return to work. But a bout of the flu made it worse, forcing her to give up firefighting in 2011, she said.
She moved to the Milwaukee area and opened Urban Upcycle, a store in Brookfield that sells recycled clothing and art. Medications and nerve blocks kept her functional until this spring, when the pain mysteriously got worse.
Moylan said she asked UW Hospital for help with no success.
Dr. Luis Fernandez, a liver transplant surgeon at UW Hospital, said records show Moylan had minimal pain the year after surgery and didn’t complain of more pain until 2010. She was diagnosed in 2011 with diverticulosis and gastritis, which are not related to her donation, he said.
“It’s hard for me to put the two together,” Fernandez said. “The timeline here does not correspond.”
After the State Journal asked UW Hospital about Moylan, hospital staff offered to meet with her again. Moylan said she plans to meet but is concerned staff will still say the pain isn’t from the donation.
“It’s in their best interest to deny it,” Moylan said. “It would create bad statistics and a responsibility for the hospital to do something.”
Enduring pain after donation
Nolan said she had a similar response from Froedtert after complaining of pain following her kidney donation.
“It was like pulling teeth; I had to push for appointments to be seen,” she said. “They’ve gotten their data that they need, and they’re basically done with you.”
The hospital eventually paid for physical therapy and deep-tissue massage, but the treatments stopped helping so Nolan stopped doing them. Later, as the pain continued and she wanted to try those or other treatments again, the hospital wouldn't help, she said.
Froedtert, in a statement, said Nolan and her doctor "made the collaborative decision not to pursue additional therapies."
Before her donation, Nolan said, Froedtert staff discussed potential risks, but “they skirted over it like it was no big deal.”
She continues to have pain on her left side, though a medication she started taking two years ago has made it more tolerable, she said.
A dispatcher for the Menomonee Falls Police Department, Nolan has two sons ages 8 and 11. She stays in touch with Sheryl Raether and her daughter Mira, Nolan’s recipient, a triplet born with kidney failure.
Mira, 9, is small for her age. But she makes up for her size with exuberance, turning cartwheels in her backyard and peddling her purple bicycle with its pink basket around her home in Oconomowoc, where the family moved several years ago.
Mira swims, plays golf, enjoys gymnastics and cavorts with her two brothers. During a recent visit by Nolan, Mira showed off badges she earned last year through Girl Scout Brownies.
Despite the pain and its impact on her life, Nolan said she would donate to Mira “in a heartbeat” if she had it to do over again. "She gets to be a regular little girl," she said.
But if transplant centers are going to rely on living donors, they should take better care of them, Nolan said.
“There’s really no help after the fact for the donors,” she said.