GLEN CARBON - Jean Sommer remembers the day she got home from the hospital, the first time she was told she would need an organ transplant.
There were 14 stairs leading to her bedroom. Her husband held her arms and lifted her up. Her son had wrapped a belt around her chest to keep her upright. Her daughter knelt at her feet, lifting each foot up the stairs, step by step.
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Two months before, she had become septic through complications of autosomal dominant polycystic kidney disease (PKD) and polycystic liver disease (PLD). She would go on to receive a liver transplant in August 2016.
Now in 2023, Sommer is once again facing a transplant list. PKD has affected her kidneys, and she has a seven- to nine-year wait before she could receive a kidney transplant from a deceased donor. Hoping to avoid dialysis, Sommer is searching for a living donor who would be willing to donate a kidney now.
“I knew this day was coming,” Sommer said. “But it always surprises people and comes sooner than what you think, and same with me. My kidneys dropped dramatically in May compared to three months ago. I was fine, but then a huge drop occurred.”
This is the nature of PKD, the disease that led to her mother’s death at age 48 after a brain aneurysm. Sommer was diagnosed with PKD 16 years later at the age of 35, and two of her siblings soon followed suit. They had never known what caused their mother’s aneurysm; the diagnoses connected all of the puzzle pieces.
After the liver transplant, Sommer was filled with gratitude and grief for the 21-year-old whose liver she had received. But the experience forced her to confront a difficult truth: Sommer would eventually need a kidney transplant, too. She is searching for a living kidney donor who could speed up this process.
“When you’re in this state, waiting is not an option,” she said. “I asked people to consider having a conversation with themselves, have a conversation with your family and friends about being a living kidney donor.”
Over the past year, Sommer has been completing the evaluations, tests and insurance information needed so she can receive the transplant as soon as possible after a donor is found. With her drop in kidney function in May, the search has become more urgent.
“I’m trying to stay healthy and trying to prolong my kidneys if possible,” she said. “My goal is to avoid dialysis. Dialysis is life-saving, life-sustaining. [But] it is very hard on your body.”
And not as effective as a kidney transplant, which would change Sommer’s life.
“I’m tearing up here. It’s very emotional,” she said. “It is, I believe, the greatest gift someone could ever give anyone. The gift of a kidney. Even when you pass away and you give organs, that is an amazing gift, too.”
More than 100,000 Americans are waiting for an organ transplant; 17 of those people die every day. As Sommer waits, she is working to dispel some common misconceptions about organ donation and to encourage people to register as donors.
“There’s a fear out there that the doctors are not going to do everything they can for you to survive because they want your organs for other people, and that’s not at all the mentality or the mindset of the doctor,” she said. “They’re doing everything they can to have you survive, and it’s emotional to them if they lose a patient.”
But if it happens, the gift of organ donation is not taken for granted. The transplant team pays tribute to the organ donor with an honor walk. Nurses and doctors line the hallway as the body is wheeled down to the operating room. This is what they did for Sommer’s mother, whose corneas went to patients and kidney to science, as well as the 21-year-old who gave Sommer a liver.
Sommer is hopeful that she will be back in the OR soon to receive a kidney transplant. In the meantime, she’ll do what she can to educate people about organ donation and the upcoming St. Louis Walk for PKD on Oct. 8. She understands firsthand how valuable organ donations are, both as a recipient and a daughter who knows her mother’s life helped so many others.
“It’s a celebration of life,” she said. “It’s very much a comfort.”
Register to be an organ donor at OrganDonor.gov. If you are interested in donating a kidney to Jean Sommer or learning more about how to become a living kidney donor, call Kidney Solutions at 830-285-2140 or visit their official website.
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