Missy Franklin Johnson, an Olympic champion swimmer, spent her time surrounding the recent Winter Games learning and spreading the word about living organ donation. It’s a topic that unfortunately is affecting her family.
Franklin Johnson’s father, Dick, and aunt and godmother, Deb, are in end-stage kidney failure. That side of the family suffers from genetic polycystic kidney disease. They are both on transplant waiting lists for a cadaver kidney. That wait can take years, so they are also looking for living donors.
Dick’s wife, D.A., went public on Facebook on Jan. 23, asking if anybody knew someone who might be interested in becoming a donor.
“Our family is looking for a Hail Mary and need your help as we are in a race for time,” she wrote.
She said then that Dick’s kidney function was at 15%, closing in on the point of needing dialysis with noticeable symptoms including extreme fatigue.
“It has been hell watching my dad go through this,” Franklin Johnson shared on Instagram on Feb. 14, National Organ Donor Day.
Dick said Friday he’s “incessantly tired” with low energy.
“Playing the waiting game on the verge of dialysis not knowing if I might get a donor kidney this month, this year or never is cause for high anxiety especially after 2 years of self imposed exile in the mountains due to Covid,” he wrote in an email.
Deb said she’s grateful to be feeling fine so far, though more tired in the evenings.
“The mental anxiety of the unknown has definitely been the most difficult adjustment for me at this point,” she wrote in an email. “I feel so defeated to be stricken with a genetic disease that there is nothing I can do to cure it, or send it into remission. The ‘wait and see’ game is especially difficult for me, who is a self aware Type A personality and accustomed to working the solution and not focusing on the problem.”
Before D.A. went public, family and friends offered kidneys. Franklin Johnson’s husband, Hayes, was the first, but “Dick would not accept this wonderful offer,” D.A. said. Others were tested but ultimately were not matches.
Since D.A.’s Facebook post, 25 more potential living donors registered on the American Transplant Foundation’s database. Some were deemed not a match through initial testing, and others are set for further evaluation.
“There are no exact stats on how many matches it takes to find a living donor, every case is different and depends on the blood type, age, medical history, etc. of a potential transplant recipient,” Anastasia Henry, executive director of the American Transplant Foundation, wrote in an email. “The general recommendation is – you need to keep sharing your story and keep looking for your living donor, your hero, till you find one.”
The family is directing anybody interested in learning about living organ donation to the American Transplant Foundation and its database.
“There are a lot of people that are in desperate need of this,” Franklin Johnson told NBC’s Denver affiliate. “It’s a very special thing to do [become a donor], we don’t want to downplay it at all, but if you feel called to do it, then we really encourage people to learn more about it.”
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