Living donors form links in organ donation chains
Organ donors talk about the decision, and process, of providing organs to others and the effects on the lives of both.
A 68-person kidney transplant chain ends with Mitzi Neyens.
The 77-year-old Wausau resident was the last link in a chain of donations that started in Minnesota, spread across the country, and ended at the University of Wisconsin transplant program in late March in Madison.
“It’s overwhelming,” Neyens said. “Someone out there was so kind to give me a second chance at life.”
Donors are one of the key links in efforts to close the gap between people in need and the availability of organs, tissue and eyes. Waiting lists for organs can span years. While the path to becoming a donor follows different routes, it comes down to a willingness to help others in need.
Donors and recipients are sharing their stories with Gannett Wisconsin Media as part of a public service campaign with Froedtert & the Medical College of Wisconsin and Green Bay Packers wide receiver Randall Cobb to help build awareness about organ, eye and tissue donations in Wisconsin.
Donations can happen a number of different ways: from living donors offering up an organ to families making the decision to provide organs to others following the death of a loved one.
Neyens got her second chance through a massive combination of donors around the country, but her inclusion in the chain is directly tied to the kidney Megan O’ Leary, a De Pere school teacher, offered on her behalf.
While she wasn’t a match to give her kidney directly to Neyens, O’Leary was still able to donate a kidney to a matched recipient in exchange for a matched kidney for Neyens, a long-time family friend.
“I was more anxious to get disqualified and not be able to donate,” O’Leary said about the donation process. “Most people say it seems like it would be hard, but to me it wasn’t, it just kind of felt like the right thing to do. I wasn’t nervous about it at all.”
About 123,000 Americans are in need of an organ transplant. More than 2,500 of those people live in Wisconsin.
Sara Berkholtz, one of the lung transplant coordinators with Froedtert, said lung transplant patients face, on average, a six month wait for a donated organ.
“Lung transplant recipients are really close to dying … and there are no other options,” she said. “Patients that get this gift are overwhelmingly grateful.”
About 1,200 people around the country are on a waiting list for a lung transplant.
“The more donors… the more opportunities we’ll have to transplant these patients who are waiting,” Berkholtz said. “There’s a real disparity as far as lungs being available for transplant.”
About 2.6 million residents in Wisconsin are registered donors, and about 2 million more are eligible, advocates say. Only a very small percentage of people — 1 to 3 percent — die within medical parameters that make them eligible for organ donation.
Neyens’ chain started with a woman in Minnesota who had no one in particular earmarked for a donation, but still wanted to give.
That kicked off the process of coordinating 34 kidney exchanges — involving 68 people. No small feat.
“It’s unheard of,” said Karen Miller, the paired kidney exchange coordinator for the University of Wisconsin transplant program. “It’s very, very difficult. So many things can happen during that process: a donor gets sick; a donor backs out; a recipient gets sick; somebody dies.”
Coordination of the chain involved 26 hospitals across the country and the National Kidney Registry, which uses a computer program to link the chain.
“It’s always amazing when transplants occur,” Miller said. “Was I surprised? No. As you get into paired kidney exchange I always hope for the very best and want every paired kidney exchange, every match, to proceed. That’s honestly unrealistic, that’s never going to happen.”
If the chain would have fallen apart, she said the team would have tried again.
And again. And again.
“There’s so much that can go wrong, and thankfully, this one went right,” Miller said. “It’s a huge relief, but at the same time I’m working on five different chains as we speak — for more than five different pairs. “
Neyens said after 30 years of living with renal insufficiency, a condition that had grown worse in the last two years, her life has improved in the weeks following the transplant.
She’s overwhelmed by the selfless acts of O’ Leary and the Minnesota donor who started the chain
“I feel wonderful. It really is a new life,” Neyens said. “No one can understand it unless you go through it.”
O’Leary said her family wasn’t surprised by her decision to give a kidney to someone else.
“I like to give things away,” she said with a laugh. “And I love Mitzi.”
She underwent her operation in early August with the goal of returning in time for the school year, a goal she made thanks to a speedy recovery.
“It was gratifying,” O’Leary said about her role in the transplant. “When we were driving to Madison the day after (Neyens’ surgery), I felt closure and that I didn’t have to worry about her any more. It was a relief.”
About a year ago, Nate Gruber got a phone call from his older brother, John, telling him his kidneys were failing and he was on a national transplant list. Gruber and two of his siblings underwent medical testing to see if any were a match for their brother.
Gruber, a father of three who lives in Wausau, matched.
“The wait for a deceased kidney donor can be very long, up to five years,” he said. “I didn’t want my brother to have to wait that long, fortunately it worked out that his wait was, in essence six months.”
The transplant was preformed in early December at the Mayo Clinic in Rochester, Minn. His brother lives in Lake City, a small southern Minnesota town.
“When the procedure was done, it was really a lot less significant than I had thought in terms of pain or discomfort,” Gruber said. “The recovery process was very quick for me. I’d say roughly four weeks or so and I felt like I was back to normal in terms of movement and getting back to my life schedule.”
He said his brother is doing well.
“His numbers, in terms of kidney function, are back to what a normal person would have and he’s feeling great,” Gruber said. “He said he hasn’t felt this great in about four years. He’s much more active and getting back to doing the things he use to do.”
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