For patients on the kidney transplant list, a donor ‘Champion’ makes all the difference
For nearly two decades, Leah Weber, a west suburban mom and health sciences professor, suffered from kidney disease. She managed the illness quietly and, despite having a huge circle of family and friends, almost no one outside her immediate family knew. Two years ago, however, the disease advanced to the point where Weber needed to start dialysis treatments or undergo a kidney transplant.
She and her husband Keith contacted the University of Chicago Medicine Transplantation Institute and enrolled in the Living Donor Champion Program. It’s a unique program for patients on the kidney transplant waiting list, along with that patient’s chosen “champion” – a friend or family member – that teaches them how to share their story in order to find living donors.
“You only need one kidney to live a long, healthy life, and most people have two functioning kidneys,” explained Steve Radakovitz, who is the UChicago Medicine Transplantation Institute’s Project Manager. “So how do you get people to learn about this and donate?” The answer is the Champion program, started in 2016.
“Some patients will never advocate for themselves, but they have a loved one who will fight for them tooth and nail, and that’s their champion,” said Radakovitz, who explained there’s a far greater demand for kidneys than a supply of them.
Some patients will never advocate for themselves, but they have a loved one who will fight for them tooth and nail, and that’s their champion.
The champion and patient attend two classes at UChicago Medicine, first to learn the basics of kidney disease and then to meet past donors and recipients and learn how to share their stories to get the word out.
“We’ll tell them to put the story on fliers, share it with social groups, put it in the church bulletin, or simply hand out cards (that the program provides) with information on living donation and a phone number for the center. The champion or patient can tell the story face-to-face and give a card to anyone who may want to follow up,” Radakovitz said.
The Webers attended one of the first Champion classes. “They talked about how we felt about asking people to be a living donor, and all four of the patients had the same response – we weren’t going to ask anyone,” Leah admitted. “The thought of someone going through pain for me was a little more than I could ask. The Champion program trains the person you brought with you to talk about the disease and donation.”
Her husband created a Facebook page to tell Leah’s story. “He put all his friends and mine on the page and left it open so they could share it,” she said. “He wrote that I’d been diagnosed 20 years ago, and the time was coming to do dialysis. He explained what a living donor was and gave a phone number to call.”
Donors must be healthy, over age 18, and pass health screenings before being accepted. After surgery is performed, a donor may spend as little as 1 to 3 days in the hospital and could return to work within four to six weeks, depending on his or her job.
The daughter of a friend Keith grew up with saw the Facebook page and told her dad. He was tested and was a match for Leah.
“He had absolutely zero hesitation,” Leah said of her donor, who has known her husband since grade school.
The surgery took place in September 2017, and five weeks later her donor was back in the gym and running. After seeing how smoothly the procedure went, another family friend wants to be an altruistic donor – donating his kidney to a stranger.
“I guess saving a life should be on everyone’s bucket list,” concluded an incredibly grateful Leah.
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