National Kidney Registry's personalized website sharing stories of those in search of live donors

ATLANTA - Jennyl Thomas, these days, longs for her old life, the one before her kidneys failed.

She loved riding roller coasters and traveling, but all of that is largely on hold.

"It just feels like it stops your life," Thomas says "That's the hardest part. I just feel like my life has stopped."

The 51-year-old Fayetteville woman needs a kidney transplant.

She is on a waiting list for a deceased donor kidney, but the wait time in Georgia can average anywhere from 3 to 6 years.

So, Thomas is hoping she can find a living kidney donor.

About 18 months ago, during a routine checkup, she heard about the National Kidney Registry's microsite program.

It has allowed just over 3,000 people searching for a living donor to create a personalized website to share their story.

"So, I created a site that tells my story: how long I've been on dialysis, how long it has affected my life, and how it's altered my life, actually," Thomas says. "To get my story out there, they give you these cool business cards with a QR code where you can scan it and go directly to my site and read about my story, and a little bit more about me.  You can find out how you can donate, not just to help myself, but to help others, because there are so many people waiting for a kidney, so they can begin their life again."

Thomas says a bout of double pneumonia in 2019 overwhelmed her kidneys, hospitalizing her for a month and forcing her to start dialysis, three times a week.

"I go through treatment for 3 hours and 30 minutes, and I'm hooked up to a machine that filters my blood and takes away the toxins," she says. "It can be very difficult, if you allow it to get in your head. So, what I do, personally, I just pretend as if I'm going to work. My chair time is 5:30 in the morning."

The National Kidney Registry connects people who need a kidney or liver with living donors.

Jennyl Thomas, 51, has created a personalized website through the National Kidney Registry (NKR), hoping her story will inspire a stranger to donate a kidney on her behalf.

The microsite program is open to patients at 51 of the NKR's 102-member transplant centers, including the Piedmont Transplant Center in Atlanta, where Thomas is a patient.

Michael Lollo, the chief strategy officer for the National Kidney Registry, who is also a living donor, says the microsite program offers patients like Thomas a centralized platform to tell their story.

Patients and potential living donors can learn more about the microside program by going to FindAKidney.org.

"The hardest part for someone who's looking for, uh, a donor is, how do they get their story out there," Lollo says.  "The cool part is, is that, you know, she could share this and all the people who have a microsite could share it anywhere, right. You know, Twitter, Instagram, Facebook."

Thomas' microsite link is www.nkr.org/DAE272/Card

"There's a link there that says, 'If you're interested in helping Jennyl, click here,'" Thomas says.

A donor could be anywhere in the US.

Since 2019, 434 of the 3,000 patients who have created a NKR microsite have been transplanted.

"You don't need to find a match," Lollo says.  "That's not what Jennyl is doing. Jennyl is just looking for someone who would donate on her behalf."

If Thomas can find a donor willing to donate a kidney to someone in the NKR pool, that would allow her to get a voucher to receive a kidney from another donor in the same system.

"It would mean going back to school," Thomas says.  "It would mean working full time. It would mean to travel freely without restrictions. I have prayed about it, and I've talked to God, and I've said, 'Okay, one day, one day, it'll happen for me.'"

Until then, Jennyl Thomas is sharing her story, and waiting for her second chance.