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Joy Schumacher will give everything she has to help other people. And she means that quite literally—in order to save two people’s lives, she became one of the handful of living donors in the world to donate both her kidney and a portion of her liver.
For Joy, it’s just part of how she feels she can best love others and give freely of what she has been given. “I don’t want any recognition or glory for any of this,” she said. “All the recognition and glory goes to God. I’m just telling my story so I can encourage others and give them an idea for what they can do.”
A family disease
Joy is one of 11 siblings, all of whom had a 50/50 chance of inheriting their father’s polycystic kidney disease. When they underwent testing, six of the 11 tested positive for the gene; Joy was one of the lucky siblings who tested negative. But she knew she had an important job. “In our family, those who didn’t have the gene donated a kidney to those who did,” she said.
Of course, the numbers didn’t exactly match up—there were six siblings who needed kidneys, and only five who had kidneys to give. What’s more, one of her healthy brothers was eliminated as a potential living donor because one of the connections to his kidney was too narrow for a transplant procedure.
Joy donated a kidney to her older sister in 2003, one of her sisters donated to a brother, and one of her brothers donated to a sister. For the fourth brother, a cousin from out of state came forward to give the gift of life. That left just two brothers who needed kidneys, and Joy’s last sister was saving her kidney for her younger brother.
Joy wasn’t the only family member who was thinking about how she could help. Her son wanted to donate his kidney, but he was rejected because his kidney was too small. Then, Joy’s aunt Bernie from Louisiana stepped forward, and caregivers at UW Health determined her kidney would be the best fit for the brother. And so the story ended with the aunt giving the last brother the gift of life, and Joy donating just one organ. Or so she thought.
While Joy didn’t have any kidneys left that she could spare, she did have a liver. She had heard that transplant centers—including UW Health Transplant Center, where she had undergone her kidney donation—offered organ exchanges. A living donor such as Joy could offer to donate part of her liver or a kidney on behalf of someone else, and that person would, in turn, move to the top of the transplant list. Meanwhile, Joy’s liver would go to a stranger in need of a liver transplant.
A stranger in need
Months later, a coordinator from the UW Health Transplant Center called Joy. She was still on the living donor exchange list—would she still be willing to donate?
“I thought to myself, I was totally willing to help another person when my brother was going to get something in exchange,” Joy said. “It just didn’t seem right to turn down an opportunity to help someone.”
Joy received a call early in 2021 that she was a match for a potential liver recipient, and she drove down from Appleton, Wisconsin, to UW Health in Madison on March 7 for her surgery. When she got there, however, she learned the recipient wasn’t well enough for the transplant. “I cried all the way home,” she said. “I felt so bad for that family.”
A few months later, Joy was matched to another recipient, and on June 8, 2021, she gave the gift of life a second time by donating 70% of her liver to a stranger.
Her transplant surgeon, David Al-Adra, MD, PhD, FACS, FRCSC, said he approved her liver donation because she was in good health, and because long-term studies have shown that it is safe to donate both a kidney and part of the liver. “The donor’s safety is our No. 1 concern,” he said. “We had our nephrologist and an independent medical examiner weigh in to make sure we wouldn’t be harming Joy by performing this surgery when she only had one kidney.”
While some of Joy’s family members were concerned about her decision to donate again, she had no second thoughts at all. “I said, ‘I’m confident God’s got this,’” she said.
And, indeed, she experienced much less pain after her liver donation than she had after her kidney donation. She was only in the hospital for four days, and her recovery at home was shorter than normal, as well.
“It was the most incredible, once-in-a-lifetime experience,” she said. “I’m just glad that I was able help someone in need.”