Dale woman continues search for kidney donorJanuary 15, 2020
By ALLEN LAMAN
DALE — Rita Henke wants to see her kids grow old, and her grandkids grow up.
They are the Dale woman’s motivation. The reason why she’s searching so hard for a vital organ that she will eventually need to replace.
Her kidneys are failing from focal segmental glomerulosclerosis, and she knows dialysis can be time-consuming and exhausting.
She’s hoping to avoid it if she can.
And she’s asking for a little help.
“I know it’s a hard decision for somebody to be a donor,” said Henke, 58. “But I would hope in my heart that I would be the one to do it for someone else if they were in my boat, my shoes.”
She knows the decision requires thought. And she knows there are risks.
“But I just think I would be willing to donate for somebody to save their life, if I could,” she said.
Her problems came to light after a visit to her doctor in 2008. She suspected she was in the early stages of a urinary tract infection, and underwent a urine test to get ahead of the ailment.
Results showed that she didn’t have a UTI. But the protein count in her urine was high, signaling an issue.
Shocked, she was sent to a kidney specialist, and then to another doctor to rule out diseases that could have been causing the abnormality. A biopsy pinpointed the culprit: FSGS, a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood.
It’s the same affliction that is causing kidney failure in her brother, Steve Sitzman.
“Your kidneys are like a filter for everything,” Henke explained. “The way my kidney specialist described it, is basically you’re getting holes in your filter. In the kidney. And all the toxins are going through and building up in your blood.”
Though she experiences no symptoms, Henke — whose kidneys are functioning at 23% — now joins two other Southwestern Indiana residents who are searching for donors and have reached out to this newspaper to share their stories.
Bill Pfister of Jasper was the first, followed by Sitzman of St. Meinrad.
Dr. Dylan Adamson is an assistant professor at the University of Louisville School of Medicine, and he’s also the surgical director of living kidney donation.
He explained that only a tiny fraction of living kidney donor candidates actually end up giving one of their organs to a recipient in need.
They are either disqualified from the procedure due to underlying medical conditions, or opt out when they learn how extensive the process can be.
“I think the number of people who ultimately call our living donor coordinators to begin the process, and the number who actually become donors, is somewhere on the order of ... it’s less than 10%,” he said. “A large number of those people kind of self-select out after their initial phone call for one reason or another.”
Once on a waitlist, recipients typically have a wait between three and five years for a transplant, he said. Because her kidneys are still functioning above a certain threshold, Henke is on the inactive transplant list at Jewish Hospital in Louisville, but doctors are encouraging her to continue to seek a match.
She doesn’t know for sure why or how she acquired FSGS. But medical professionals believe it could be hereditary.
Because of this, her children were discouraged from donating a kidney, and she doesn’t know of anyone else who could help.
“When I found out 12 years ago, back in 2008, it really, really got me upset,” Henke recalled of her diagnosis. “Dialysis, and all this stuff. And [her nephrologist] was like, ‘That’s a long way away.’ Well now, it’s 12 years later, and 12 years goes pretty fast when you’re knowing what your outcome is going to be at some point.”
Henke has dedicated hours of her life to understanding her condition — she researches it online, has joined kidney communities on Facebook and watches monthly health webinars.
All because she wants to know what lies ahead and what could help her fight.
“I figured the more I know, the more I can help myself,” she explained. “Being proactive, trying to find somebody. Or getting the information out, just in general.”
The process is much more complicated than she ever would have guessed. It’s more than matching to her Type A blood, which is also compatible with Type O; It involves blood and urine tests and procedures like a CT scan to ensure the safety of the donor.
Adamson can understand why it can be a surprise that so few people actually end up getting to the point of donating. And he can understand the frustration hopeful recipients feel when their potential donors get turned away.
But finding a good match is a responsibility he takes seriously. Taking a kidney from an at-risk donor could complicate their life down the road.
“When it comes to living donations, I’m on the advocacy side for the donor,” Adamson said. “If something is not safe for the donor, then that’s my responsibility.”
Living donors must be healthy adults with no history of blood sugar or diabetes problems. High blood pressure can rule them out, as can a history of urinary tract infections, kidney stones and certain underlying conditions.
For those who can give, the National Kidney Foundation reports that most people with one kidney live normal, healthy lives. One transplanted kidney can work as well as two, and in general, most people with a single, healthy kidney have few problems.
Those with questions are encouraged to call Henke at 812-639-9198, or contact her through her Facebook page, Rita’s Kidney Search. Readers wanting to begin the testing process can contact her living kidney coordinator at 502-587-4990.
Donation costs are covered by Henke’s insurance, and any information shared with the transplant team is kept confidential. If a willing donor is not a match for her, they can still donate and be a match with someone else, and Henke would then be guaranteed a kidney from a kidney pool through a pairing program.
“It takes the right person,” Henke said. “It is a big decision for somebody to be a donor. And it takes the right person to be willing to do that.”
Henke and her husband, Steve, have two kids — Nick (Deena) Henke of Redding, California, and Melissa (Kyle) DeMoore of Jasper — and four grandchildren.
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