http://triblive.com/news/healthnews/7289470-74/kidney-donors-lillyLifesaving risks: Thorough evaluations coming for potential organ donors
By Luis Fábregas
Before she donated a kidney, friends and relatives questioned Amy Mowry's decision to put herself through risky surgery.
“A lot of people told me I was crazy,” said Mowry, 34, of Penn Township, Butler County. “They told me that I have children to worry about and that all these horrible things could happen.”
Doctors warned her about potential complications. And during surgery, Mowry suffered a torn colon, which she had been told had a less than 1 percent chance of happening. It slowed her recovery, but she has no regrets.
“I would totally do it again, even with the complication,” said Mowry, who donated a kidney to Rose Stafura of Cranberry, whom she met only a few weeks before the surgery.
About 6,000 people a year choose to donate an organ while alive, often to someone they know but sometimes to a stranger. Despite good intentions, some fail to fully understand the risks of the surgery, experts said.
The United Network for Organ Sharing, the nonprofit that runs the nation's organ transplant system, in February will put in place policy that calls for donors to undergo more thorough medical and psychosocial evaluation and screening. Experts worried that earlier guidelines lacked consistency.
“It's very important to understand, as best as we can, why an individual is coming forward to do this,” said Mary Amanda Dew, chairwoman of the UNOS living donor committee and a professor of psychiatry at the University of Pittsburgh. “Their motives are important because we don't want anyone to feel pressure or coerced to do this.”
In their eagerness to help someone, potential donors don't realize the complexity of the surgery, Dew said.
Some advocates say it's not possible to give donors comprehensive information about risks because there is no national database tracking the health of donors after surgery. UNOS tracks kidney donors for two years but does not plan to extend the requirement, a spokeswoman said.
“How can we tell them about risks if there's no database with long-term information?” said Dr. Lainie Ross, associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “We aren't following them long-term, and that's a real problem.”
‘POTENTIAL FOR HARM'
The new policy outlines components of a donor evaluation that includes screening for infectious diseases, cancers, diabetes and hypertension. It details reasons that someone could be ruled out as a donor, including mental illness or suspicion that the donor was pressured to undergo the surgery.
The guidelines apply to people who want to donate kidneys, livers, lungs, intestines or pancreases. Transplant centers must give donors data on the survival of recipients at the center performing the surgery.
“Donors are giving something in order to help someone else, so it's important to know the chances that it is going to help someone else,” Dew said.
Donors receive detailed information about potential risks, including the possibility of death. Kidney donors, for example, have increased risk of developing kidney failure, which usually requires dialysis or transplantation. The most recent fatalities occurred in 2010 with the deaths of two people who had donated parts of their livers, UNOS reported.
At UPMC, kidney donors sign an 11-page consent form and undergo interviews in which doctors bring up every possible eventuality. That includes the possibility that they might uncover a serious illness during screening, said Dr. Puneet Sood, a nephrologist at UPMC's Thomas E. Starzl Transplantation Institute.
“It's a procedure where you will not have any physical benefit out of it, and there's only a potential for harm, and some things cannot be foreseen,” Sood said.
The benefit people get from donating is a psychological one, he said.
‘I HAD TO HELP'
Christina Betancourt, a mortgage officer from New York, said she felt a calling to help Lilly Harbin, a 9-year-old from West Virginia she had never met. She learned the girl needed a kidney through a Facebook posting.
“My heart just bled when I read about her case. For some reason, I just knew I had to help this girl,” said Betancourt, 40, who underwent surgery to remove a kidney Nov. 13 in Allegheny General Hospital. She is recovering in her Long Island home.
Lilly, who had a transplant in Children's Hospital of Pittsburgh of UPMC, plans to return to school in January.
“I figured if I can save someone's life, I would be open to that,” Betancourt said.
The fact that Betancourt risked her life was not lost on Lilly's mother, Justine Harbin of Weirton. Other potential donors for Lilly, who has polycystic kidney disease, dropped out. Harbin, 28, said it's as if Betancourt is a second mom to her daughter.
“I could never repay her,” she said. “I want to keep her in Lilly's life. That's the only thing I could ever do.”
Mowry, a former drug and alcohol rehabilitation therapist, said the transplant team at UPMC Montefiore, where surgeons in 2013 performed 105 living donor kidney transplants, was clear about potential risks when she offered a kidney to Stafura.
Different people asked whether anyone forced her to make the donation; experts say sometimes there's subtle pressure, even from family members.
Mowry found out about Stafura's case from a Facebook posting. Both were young mothers, and that struck a chord with Mowry.
“I can't imagine not seeing my children grow up,” said Mowry, a stay-at-home mother of three. “If I was in her situation, I would hope someone would help me.”
FAITH A FACTOR
Mowry never second-guessed her decision, even when her husband prompted her to reconsider with questions such as, “What if one of our kids ever has kidney disease and needs your kidney?” she said. It took almost six months to convince him.
When she met Stafura, it felt like they were old friends, she said.
Stafura, diagnosed with kidney disease in 2010, said her 5-year-old daughter never knew her mother to be healthy. Despite dealing with some organ rejection problems, she has regained energy and hopes to return to work in a few weeks.
“There aren't even words to say how thankful I am. (Mowry) is an angel, and I tell her every day.”
Some donors say faith influences decisions.
“God has blessed me with this body that is healthy. As a Christian, I have to be able to give,” said Wendy McPherson, 58, of Brookville, Jefferson County.
She donated a kidney on Oct. 23 to David Parker, her daughter-in-law's father. Parker was on dialysis for three years.
McPherson, a speech language pathologist for the Punxsutawney School District, cultivated a desire to give from her mother, Anna Jayn Cowan, who died in 2003. Her mother wanted to be an organ donor, she said, but couldn't because of health problems.
“I'm sure she's looking down from heaven, very thankful that I did this.”
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