Taryn Seymour, an interior designer with two young children who lives near Spring Green, donated a kidney to a stranger this year. “I think the spirit of giving is contagious,” she said.
Adam Allison, who lives in Verona and works at Epic Systems Corp., also gave one of his kidneys to someone he doesn’t know. “It was more of a why-not than a why,” he said.
Carol Hartmann’s son needed a kidney, but she was not a match. After someone else donated to her son, Hartmann, a teacher from New Berlin, provided a kidney to an anonymous recipient.
“I’m just grateful I was in a position to be able to do that,” she said.
The three were among a record of 28 people at UW Hospital this year who became a special type of organ donor: a non-directed donor, someone wishing to give to anyone, without having a loved one or friend needing a kidney in return. They are also known as humanitarian, or Good Samaritan, donors.
With the nation’s daily discourse dominated by political uproar, mass shootings, racial strife and other challenges, it’s not clear why Madison has seen a surge in people willing to undergo significant surgery to help someone with whom they have no connection. It’s a mystery that may be especially thought-provoking to some on Christmas Day.
“Society in general just wants to do good right now,” said Leza Warnke, a UW Hospital transplant coordinator, sharing her own theory. “We’re hurting for some ‘feel good.’”
Garet Hil, founder and CEO of the National Kidney Registry, which organizes transplant chains started by non-directed donors, said the number of such donors has been steadily increasing around the country in recent years. About 300 of the donors emerged nationwide this year, which still makes the act unusual, he said.
“We don’t know what’s driving it,” Hil said. “It’s still about one in a million. These are very special people.”
UW Hospital likely had the most non-directed kidney donors of any transplant center in the country this year, Hil said. The United Network for Organ Sharing, which oversees the nation’s transplant system, was unable to verify that.
Donors mostly women
From 2003, when UW Hospital had its first non-directed donor, to 2017, the hospital had an average of fewer than four such donors per year. The tally rose to 12 last year before more than doubling again this year.
The 28 non-directed donors in 2019 ranged in age from 23 to 78, and included 22 women and six men. Two were from Illinois and one was from Indiana, with the rest from Wisconsin, including seven who live in Dane County.
UW Hospital became a Donor Care Network Center of Excellence in October 2018, which may encourage non-directed donors to pick Madison as a site, hospital staff said. Increased media attention to organ donation also may be contributing to the uptick, staff said.
Nationally, a family voucher program launched this year allows non-directed donors to name up to five family members who could get a donor organ in the future if needed. Another new program, Donor Shield, codifies reimbursement for travel expenses and lost wages for living organ donors, which could lead more people to sign up.
Most of this year’s UW Hospital donors didn’t know about those programs when they started the process, staff said.
Fourteen of the 28 kidney donations started chains of two or more transplants around the country. Transplant chains, which started in 2008, connect people who need kidneys and their willing but mismatched donors with other incompatible pairs to find suitable donors for all recipients involved.
“Their gift is multiplied,” Hil said. “That’s a lot of power.”
In other cases, non-directed donors help recipients who are difficult to match because of blood transfusions, pregnancy or previous transplants, said Karen Miller, a UW Hospital transplant coordinator.
Sometimes, they allow people on the deceased donor waiting list, who have rare blood types, to get living donor kidneys, which tend to survive longer.
“That is certainly one of the best phone calls I can make,” Miller said.
Julie Kemp Pick, of Highland Park, Illinois, received such a call in August.
The 58-year-old writer, who has a condition called polycystic kidney disease, had been on the deceased donor waiting list for nearly three years and started dialysis in early 2018.
She was undergoing dialysis when her phone rang. It was Miller, telling her she was eligible for a living donor kidney as part of a transplant chain started by a non-directed donor.
“I was in complete shock,” Pick said. “It restored my faith in mankind. I couldn’t believe someone was willing to do this for someone they didn’t even know.”
She received her transplant in October — on Yom Kippur, a holy day for Jews like her. Now, she is feeling so well, she walked five miles on a cold day this month to take in the holiday decorations in downtown Chicago.
“I would have had a hard time doing that before,” she said.
Hartmann, 58, an elementary school Spanish teacher in the Milwaukee area, was disappointed she wasn’t a match early this year for her son, Dan, 31, who developed kidney disease at 16.
Her son-in-law donated a kidney to Dan in June. Afterward, Hartmann decided to become a non-directed donor, qualifying for the designation because she no longer knew someone in need of a kidney.
“I know what it’s like to be on the waiting end of having a loved one who needs a kidney,” she said.
Her donation, last month, started a six-transplant chain involving 12 people at hospitals in Minnesota, New York, California and Utah.
“I’m very hopeful that all the recipients have a better quality of life and more days to enjoy with their family and doing things that make them happy,” Hartmann said.
Why not me?
For Allison, 31, the Epic employee, a “Freakonomics” podcast episode spurred him to become a non-directed donor.
He hadn’t heard about the concept before listening last year. The discussion focused on transplant chains. Allison was taken by the notion that a gift from one person could help many.
At first, he thought non-directed donors “must be some shiny, golden example of human beings,” he said.
Then, he thought, “no, they’re probably people like me — people who are healthy and have the means to take some time off work ... If I’m not the right candidate to do this, I don’t really know who is.”
His surgery, in May, resulted in a five-transplant chain involving hospitals in Illinois, California, Florida and Massachusetts.
He returned to work within two weeks and is back to running and other activities. “It’s like it never happened,” he said.
Like Allison, Seymour, 38, regularly donates blood and sometimes gives money to nonprofits.
She didn’t seriously consider non-directed donation until she heard an episode of National Public Radio’s “Fresh Air“ early this year. Dr. Josh Mezrich, a UW Hospital transplant surgeon, talked about his book, “When Death Becomes Life: Notes from a Transplant Surgeon.”
Despite having children, now ages 6 and 2, and an interior design business to run, Seymour took time off to donate a kidney in July. During the preceding weeks, she would lie awake and worry about her health and her family.
But the procedure — which started a three-transplant chain in Connecticut, Pennsylvania and Oregon — went smoothly.
“It was easier than a C-section recovery,” she said.
She has written a letter to her recipient — whose age, gender and location she does not know — and hasn’t heard back. Her letter made it clear she has no expectations of interaction, but she wonders how the person is doing.
Regardless of the outcome, she hopes her donation “promotes a spirit of generosity.” She is thinking about donating bone marrow and even part of her liver some day.
“There’s a whole lot of negativity surrounding us now,” she said. “If there’s a way to ignore or overcome or negate that, I think a lot of people are interested in ways to do that.”
Fave 5: Reporter David Wahlberg picks his top stories of 2019
We are sharing Wisconsin State Journal staffers' favorite work from 2019. From health reporter David Wahlberg: I spent much of this year doing reporting projects on two topics involving the state's growing aging population: fatal falls, for which Wisconsin leads the nation; and dementia, a challenge for patients and caregivers. Part of my interest in older adults is my own parents, who are 90. I wrote about my dad in a story about an Honor Flight trip I took with him.
Wisconsin has the nation’s highest rate of deadly falls among older adults, outnumbering deaths from breast and prostate cancers combined. Sev…
An expected doubling of residents with dementia, coupled with a caregiver shortage hitting rural areas especially hard, presents a growing cha…
“Everyone played a role, from the guy that censored the mail to the ones that climbed Mount Suribachi,” said David Nichols, president of the nonprofit Honor Flight Network.
Since the start of Wisconsin’s opioid addiction epidemic 20 years ago, more than 8,500 residents have died from opioid overdoses.
Madison-area clinics are offering stem cell injections for joint pain, joining hundreds of clinics around the country promoting stem cell therapies for a variety of disorders — some of which federal regulators have tried to shut down, saying the treatments are unapproved and can be harmful.
“I was in complete shock. It restored my faith in mankind. I couldn’t believe someone was willing to do this for someone they didn’t even know.” Julie Kemp Pick, 58, a kidney recipient from Highland Park, Ill.
“I was in complete shock. It restored my faith in mankind. I couldn’t believe someone was willing to do this for someone they didn’t even know.”
Julie Kemp Pick, 58, a kidney recipient from Highland Park, Ill.
In this Series
Weekend re-reads: Check out these Wisconsin State Journal stories honored in state newspaper contest
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