Keli Thorn found out she has polycystic kidney disease, a genetic disease, in 2009 when she was 32. In September 2019, Keli, at 42, was told her disease reached Stage 4, which means she’ll need a kidney transplant or go onto dialysis if she cannot find a donor.
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“I don’t feel sick, but on paper I am,” she said. “Accepting it is the hardest part of this.”
Though she doesn’t feel sick, she has some of the signs she’s not fully healthy, including fatigue and back pains. These symptoms, Keli said, have been her “new normal.”
Keli, who works in accounting, needs to rest when she gets home, and that’s been her routine in the past few years.
Polycystic kidney disease affects not only the kidneys but other organs, according to the U.S. National Library of Medicine. Clusters of cysts form in the kidneys and interfere with the kidneys' function, filtering waste from the blood. The cysts cause the kidneys to become enlarged and can lead to kidney failure.
Keli’s cysts are now bigger than her kidneys.
The Thorns are fighting to get Keli a kidney, acting on the advice she received from doctors at The Christ Hospital to actively search for a donor rather than waiting.
Despite Aaron's health issues, he and his children are working to get the word out about Keli in hopes someone will answer. Pleas include posts on Facebook, a website, kidneyforkeli.com — which has been seen by thousands of people since it launched at the end of December — posting flyers and signs around the county and standing outside Bridgewater Falls with a large sign hanging from his shoulders.
And these pleas can work.
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In 2013, Tim Gentile was diagnosed with Stage 4 kidney disease, and his doctors advised him to proactively search for a donor instead of waiting — a process that can take years.
Meg Kleman told the Journal-News she kept seeing Gentile’s red, white and blue signs in her Liberty Twp. neighborhood. She called the number on the sign, and in July 2017 was one of more than 35 people who offered to be tested to see if they were a match. Kleman, who lived about four miles from Gentile, was the best match.
Gentile said the search was long, and the disease was painful, but it was about keeping up the fight and “keep doing whatever” he had to do.
Unfortunately, that’s what the Thorns have to be prepared to do, and it takes a lot of perseverance, he said.
“You can’t imagine what it’s like trying to beg somebody (for a kidney),” Gentile said. “It took a lot of work and the signs are not cheap. It was almost like another job.”
But it was worth the work because “you’re trying to get attention.”
Aaron said people have offered money, and he has repeatedly replied, “Thank you, but I don’t want money. I need a kidney.”
Those who wish to help spread the word about Keli can do so via PayPal at Kidney For Keli, or by purchasing a yard sign at The Sign Place in Middletown at 513-424-7446.
Keli is finishing the final stages of the transplant testing, and soon she’s expected to be added to the list of those seeking organ donations from the deceased. But there are no guarantees when she could get a new kidney.
That prospect, though, motivates Aaron to keep fighting to find one.
“You gotta go get it,” he said. “No matter what it is, no matter how long it takes.”
One other option is for a paired exchange donation where two kidney recipients, whose blood types are not compatible with respective donors, can swap donors if blood types are compatible. If a swap can happen, the two kidney transplant operations are scheduled to occur simultaneously, according to The Christ Hospital.
If a swap can’t happen, the Thorns also hope the 100 or so respondents to their request — thanks to local and national media coverage — can be paired with another stranger also in need of a kidney.
Keli’s blood type is A+ and blood types A+, A-, O+ or O- are compatible.
The Thorns are in awe of the response so far, and are hopeful Keli won’t have to wait years for a new kidney.
“Who are we in Fairfield Twp., Ohio to be cared about so much,” said Aaron. “We’re overwhelmed, stunned and thankful.”
HOW TO HELP
If you want to find out if you can help Keli by donating a kidney, either to her or to someone else, contact:
Jessica Ratcliff at The Christ Hospital at 513-585-1427 or Jessica.Ratcliff@TheChristHospital.com.
You may also reach her by mail at:
Kidney Transplant
2139 Auburn Ave., Room 5089
Cincinnati, Ohio 45219
WHAT TO KNOW
Donating a kidney is a noble act, offering to save the life of either a loved one, friend or stranger. Here are some things to know about kidney donation.
• Donating a kidney is a major surgery but it’s not shown to reduce a donor’s life expectancy.
• Donors face possible postoperative complications, such as bleeding, wound infection and fever. Most of the postoperative complications are generally short term and are addressed with quality medical care.
• The two types of kidney removal procedures, laparoscopic and non-laparoscopic, have different recovery times. Laparoscopic is less invasive and allows the donor to be discharged one to two days after surgery, and donors can return to work in one to four weeks depending on their occupation. Non-laparoscopic surgery has a longer recovery time.
• More than 5,000 living donors in the United States donate their kidneys every year. But the procedure is not without risks. Donor surgery has a 3 in 10,000 mortality rate, which means on average 3 donors die for every 10,000 living donor surgeries. By comparison, the infant mortality rate was 58 in 10,000 in 2017.
For more information, visit the Donor Care Network at donorcarenet.org.
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