Saturday, April 12, 12 p.m.-3 p.m.ย at Radiant Wellness Spa (Brookfield Professional Park, 33905 S.R. 54, Suite #101, Wesley Chapel). There will be free food and wine tasting, raffles and special pricing for booking services at the event. For more info, call (813) 715-2099 or visit Radiant-Wellness-Spa.com.
On Friday nights, if sheโs feeling up to it, Kayla Long loves to belt out her favorite karaoke tunes โ maybe Carrie Underwoodโs โBefore He Cheatsโ or โJesus Take the Wheelโ โ while her fiancรฉ, Chris Candelora, and four boys, ages 13, 9, 8, and 7, cheer her on.
Kayla says itโs the only time she feels normal. โIt brings me a whole lot of joy,โ 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.
โMy mom struggled with addiction, so I had been adopted by my grandmother,โ Kayla says. โI was afraid to take opiate pills after surgery, so I used ibuprofen instead. But, it was an extreme level of pain and you just canโt take ibuprofen for that.โ
The irony, she says, is that she is still in pain, but now from the effects of ESRD.
โI literally killed myself not taking pain pills and thereโs nothing they can do,โ she says. โIt just gets worse and worse.โ And, Kayla says, it will continue to get worse.
That is, unless she gets a new kidney.
โI have been on dialysis for the last two years,โ 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. Sheโs 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.
Itโs all a lot to navigate. Even on the best days, dialysis leaves her tired and unable to do much of anything. โDialysis is very hard on your body,โ she says. โIt can cause heart damage, gout and other health complications. Iโm exhausted and nauseous all the time.โ
She adds that she had two blood transfusions last year, even having to leave her sonโs birthday party halfway through for an emergency visit to the hospital.
Sheโs hoping to receive a kidney as soon as possible. Kaylaโs 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.
โTransplanted kidneys last an average of five to 10 years from a deceased person,โ she says, โbut from a living donor, the average is 20 years.โ
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 doesnโt matter if it is O positive or O negative.
If she finds a willing donor with type O blood, they would go to AHLivingDonor.comto begin a screening process to see if the donorโs kidney is a potential match for Kayla.
โI have four children,โ Kayla says. โI worry all the time. Am I going to leave them before theyโre 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, thatโs all up in the air.โ
Kayla Long needs a kidney to continue to be around for her sons Jack, Ari, Keegan & Chris (nephew Leeland is 4th from left).ย
Kayla first met Chris on the bus to Weightman Middle School when they werenโt even teenagers yet. โHe used to ride his bike to my house and hang out with my brother and sister,โ she says. โWeโve been together since we were 22.โ
She says being sick, blind and in chronic pain makes it so the couple canโt 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.
โMy fiancรฉ works so hard to provide for all of us,โ Kayla says. โIf heโs not at his job, heโs doing a side job or working on our car or fixing something in the house or fixing something at someone elseโs house.โ
Unless itโs a Friday night.
Thatโs when they take the kids to Commandoughโs in Zephyrhills, where they order pizza, the kids get up and sing and dance, and Kayla will take the stage.
Itโs only then that she says she feels true joy.
โEverybodyโs happy,โ she says. โIโm happy. My kids are happy. I donโt feel self-conscious. I just get up there and sing, and then all of a sudden, I feel normal for a while.โ
Kayla says she is working on setting up a trust, with legal fees sponsored by Commandoughโs, 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 Kaylaโs journey, search for โKidMe in Your Prayers: Kaylaโs Transplant Journeyโ 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.