Family hopes their story inspires others to be living kidney donors
Like many people do, Scott Sargent began telling his story on Facebook:
"Well, kind of a good news bad news kind of day," he posted on March 8, 2012. "Good news is, I know why I've been so tired these last few weeks. Bad news is that I need a new kidney. Anybody got one to spare?"
What began as a lighthearted message to break some very serious news to his friends ended with a much deeper connection to his family, and a story that Scott and his wife used as a unique opportunity to educate others about organ donation.
For two weeks before writing that Facebook post, Scott had been feeling tired and run down, with a bad head cold. A substitute teacher from Kankakee, Ill., he had almost passed out while teaching a junior high gym class. He went to the doctor thinking he had the flu, but was quickly sent to a nephrologist, who diagnosed him with advanced kidney failure. He would need a transplant.
Scott chose the transplant center at the University of Chicago Medicine because he believed it was the best in the field. He and Shelly spent the next few months learning more about the transplant process and adjusting to the routine of doctor's visits and dialysis. Scott was against asking family members or friends if they would consider donating a kidney because he didn't want to place a burden on anyone. But after learning that at his age (39 at the time) a transplant from a living donor would last the longest and give him the best chance for a good outcome, he relented.
His mother and sister both volunteered but were not able to donate. Scott was officially placed on the waiting list for a donor kidney in June that same year, and within days he found out that his older brother Tim, who lives in Kentucky, was a match. Scott underwent a successful kidney transplant surgery on September 4, 2012, thanks to the generosity of his brother.
"He gave part of himself so that I could continue on with life," said Scott, who continues doing well five years later.
Shelly, Scott's wife, said she struggled with how to thank Tim and his family for what he had done.
"How do you thank someone who gave you your life back? You just can't. I wrote him thank you cards on Scott's birthday and our anniversary, but it just never felt like enough," she said.
Tim had four grown children, but he had also adopted a fifth, Lili, who was just 5 at the time of Scott's transplant. Shelly decided to make a photo book that chronicled Scott's journey, because she wanted Lili to know what her dad had done for her uncle.
"I was afraid she would grow up and totally forget. I wanted her to always know that her dad was a hero," Shelly said.
The book was a hit, and family members suggested they turn it into something that could be shared with others to spread awareness about the need for living organ donors. Both Shelly and Scott said they hadn't known very much about the organ transplant process before their experience, and saw a need for more educational materials.
The photo book provided them a template for the ideal audience: children like Lili, who could read a book with their parents and learn about organ donation together. Shelly eventually adapted it into a book for children, "My Dad the Hero," which tells the story of Scott's transplant and Tim's gift to his younger brother. The book is illustrated, and includes photos of Scott and his family because they wanted to reinforce the message that it was real story that happened to real people, not a cartoon or a fairy tale.
Yolanda Becker, MD, professor of surgery and director of the kidney and pancreas transplant program at the University of Chicago Medicine, performed Scott's kidney transplant. She agreed on the need for more education, made all the more urgent because of the ever-growing number of patients waiting for a transplant. Currently, more than 109,000 people in the U.S. are on the waiting list for a kidney transplant. Scott was one of only 16,487 patients who received a kidney transplant in 2012. Of those, just 5,619 were from living donors.
"Organ donor awareness is critical in the field of transplant," Becker said. "There is so much that can be done and a book such as this really encourages conversations. We are so thrilled that the Sargent family took the time to get this published and we look forward to using the book in our education efforts."
Two years after Scott's transplant, the book is now on sale. Scott and Shelly have been using it as part of educational sessions in their community, and say they hope it can become a tool to help others learn about living organ donation.
"I would love to hear of a story where a child brought the book home, and as their dad read it to them and they said, ‘Dad, would you be a hero?" Shelly said. "I think there's going to be a lot of parents of young children who haven't heard of the need for living donors. I'm hoping that my book would open up the possibility for them too."
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