Category: Featured

On Friday nights, if she’s feeling up to it, Kayla Long loves to belt out her favorite karaoke tunes — maybe Carrie Underwood’s “Before He Cheats” or “Jesus Take the Wheel” — while her fiancé, Chris Candelora, and four boys, ages 13, 9, 8, and 7, cheer her on. 

Kayla says it’s the only time she feels normal. “It brings me a whole lot of joy,” she says. 

The Zephyrhills mom, who grew up in Wesley Chapel, has end-stage renal disease (ESRD), a condition where the kidneys have permanently lost most of their ability to function. She says it stems from years of taking too much ibuprofen, trying to manage pain after surgery to correct severe scoliosis when she was 14. 

“My mom struggled with addiction, so I had been adopted by my grandmother,” Kayla says. “I was afraid to take opiate pills after surgery, so I used ibuprofen instead. But, it was an extreme level of pain and you just can’t take ibuprofen for that.” 

The irony, she says, is that she is still in pain, but now from the effects of ESRD. 

“I literally killed myself not taking pain pills and there’s nothing they can do,” she says. “It just gets worse and worse.” And, Kayla says, it will continue to get worse. 

That is, unless she gets a new kidney. 

“I have been on dialysis for the last two years,” Kayla says, adding that those two years have been filled with pain and setbacks. 

Unable to work, her days are filled with traveling to and from Plant City three days a week for dialysis. She’s away from home for about six hours on those days. The other days, she goes to other medical appointments, if she feels up to it. 

In addition, Kayla has been legally blind since birth, which adds to her challenges. 

It’s all a lot to navigate. Even on the best days, dialysis leaves her tired and unable to do much of anything. “Dialysis is very hard on your body,” she says. “It can cause heart damage, gout and other health complications. I’m exhausted and nauseous all the time.” 

She adds that she had two blood transfusions last year, even having to leave her son’s birthday party halfway through for an emergency visit to the hospital. 

She’s hoping to receive a kidney as soon as possible. Kayla’s been on the transplant list since February. If someone passes away whose kidney is a match for hers, she would be eligible to receive it. But even better, she says, would be a living donor. 

“Transplanted kidneys last an average of five to 10 years from a deceased person,” she says, “but from a living donor, the average is 20 years.” 

Kayla is working with the AdventHealth Transplant Institute to find a living kidney donor. She needs a kidney from someone with type O blood, and says it doesn’t matter if it is O positive or O negative. 

If she finds a willing donor with type O blood, they would go to AHLivingDonor.com to begin a screening process to see if the donor’s kidney is a potential match for Kayla. 

“I have four children,” Kayla says. “I worry all the time. Am I going to leave them before they’re ready? Am I going to get to see them graduate, grow up, fall in love, play with my grandkids? Can I even grow old and get married to the man I love? On dialysis, that’s all up in the air.” 

Kayla first met Chris on the bus to Weightman Middle School when they weren’t even teenagers yet. “He used to ride his bike to my house and hang out with my brother and sister,” she says. “We’ve been together since we were 22.” 

She says being sick, blind and in chronic pain makes it so the couple can’t do a lot of things that typical couples in their 30s with young kids want to do, but Chris has stuck by her side through all of the trials. 

“My fiancé works so hard to provide for all of us,” Kayla says. “If he’s not at his job, he’s doing a side job or working on our car or fixing something in the house or fixing something at someone else’s house.” 

Unless it’s a Friday night. 

That’s when they take the kids to Commandough’s in Zephyrhills, where they order pizza, the kids get up and sing and dance, and Kayla will take the stage. 

It’s only then that she says she feels true joy. 

“Everybody’s happy,” she says. “I’m happy. My kids are happy. I don’t feel self-conscious. I just get up there and sing, and then all of a sudden, I feel normal for a while.” 

Kayla says she is working on setting up a trust, with legal fees sponsored by Commandough’s, to help provide for her family so Chris can care for her full-time for a few months after her transplant, a necessary part of her recovery. 

To follow Kayla’s journey, search for “KidMe in Your Prayers: Kayla’s Transplant Journey” on Facebook. To start the process to learn more about donating a kidney to Kayla or someone else like her who is on the waiting list for a transplant, go to AHLivingDonor.com.