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Woman creates social media campaign to find kidney donor for daughter

By Molly Haines

At 23 years old, Kylie Newsome was a young, care-free girl dreaming of what her future might someday be. Little did she know, her life was about to change forever.
The 2012 graduate of Owen County High School had moved to Kansas City, Kansas in 2017 to be closer to friends and decide what path she wanted to take in life.
But persistent pain and fatigue had begun to slow her down. She believed her condition was a kidney infection and ignored the symptoms as best she could thinking it would go away on its own.
Eventually, simple tasks such as walking her dog began to take a toll on Kylie.
“The symptoms started getting worse,” she said. “I couldn’t eat any fast food without throwing it up. I would go to walk my dog in Kansas, and I couldn’t even walk up a slight hill without feeling like I had just run a marathon.”
When her condition became too much to bear, Kylie decided it was time to visit an emergency room.
More than 500 miles away from her hometown of Owenton and with no family in sight, Kylie sat in an ER alone as doctors and nurses rushed around her, administering drugs and running a gamut of tests.
“I’m sitting in this hospital room all by myself — my ex-boyfriend was there off and on, he was there when I got the news — and the doctor comes in and says I’m in end-stage renal failure,” Kylie recalled. “I didn’t really understand. I asked if someone could explain, and they said my creatinine was high. Basically, I was in kidney failure with both of my kidneys.”
Not fully understanding the depth of her diagnosis, Kylie contacted her mother, Tonya Lindsay, and shared the news.
As a nurse, Tonya believed her daughter misunderstood the diagnosis and initially thought Newsome’s condition to be a kidney infection, not uncommon for young girls.
“You just don’t think a 23 year old would be landed in the hospital, let alone in another state,” Tonya said. “Me being a nurse makes it a little more terrifying. By the time we made arrangements (and got to Kansas), she had already had a kidney biopsy. She had already had a central line put in and had already been given emergency blood transfusions.”
After weeks of treatments, Kylie’s nephrologist pulled Tonya aside to discuss a diagnosis of Goodpasture’s Syndrome, a rare autoimmune disorder that attacks the basement membrane in lungs and kidneys, leading to bleeding from the lungs and kidney failure.
With a poor prognosis, Kylie’s doctors began trying to regain any kidney function to stabilize her enough to return to Kentucky.
Upon her return to Kentucky, Kylie was able to be at home for a short time before her potassium levels began rising, which can be dangerous to the heart and even cause a stroke. She was admitted to St. Joseph Hospital in Lexington under a physician’s care who had previously treated an Owen countian with Goodpasture’s Syndrome.
As Kylie’s creatinine rose to dangerous levels, she was sent to surgery and then put on dialysis. For the next two days, she endured two more surgeries all under local anesthesia, as Goodpasture’s Syndrome can affect the lungs.
Once stable, Kylie went to live with her father in Eastern Kentucky, where a dialysis center was a short distance from his home. She began hemodialysis three times a week, and soon started the process for a kidney transplant at UK Healthcare’s Transplant Center.
“At this point, I don’t know if anyone could comprehend the physical image that (Kylie) had,” Tonya said. “She had scars everywhere; she had been put on prednisone in Kansas which induced diabetes. The hospital there made a slight error when giving her diabetes medicine that caused her sugar to drop; she ended up in the ICU. This is a lot for a 23 year old.”
Kylie soon began meeting with transplant coordinators and surgeons all while enduring further testing and procedures.
For Tonya, the decision she needed to make was obvious.
“I, of course, was the first to say ‘test me for a donor,’ along with her sister, (Amanda Whobrey), feeling we would certainly be the best match,” Tonya said in a Facebook post regarding Kylie’s story.
When Tonya began testing to be approved as a donor, Kylie returned to Owenton to live in a rental property owned by a family member.
“She did fairly well by herself,” Tonya recalled. “She was feeling pretty good, so we were really looking forward to the transplant, and then I got denied right at the last minute. They found a couple of things on me. The way we look at it, there was a reason; that way I found out what was wrong with me.”
In between testing Tonya and Amanda, Kylie ended up back in the hospital when her abdominal tube for dialysis flipped, causing increased pain and shortness of breath, sending her back to surgery.
During the hospital stay, the unexpected happened when Kylie began urinating despite her diagnosis of renal failure. Additionally, Kylie’s labs began to improve.
Before continuing with the process of a transplant, Tonya and Amanda decided Kylie should be taken off dialysis for a day to see how her body would react.
“By the time we could see a doctor, she had not done her dialysis for several days,” Tonya said. “There was no swelling; her kidneys were still functioning. We think a miracle has happened. It was like we hit gold, only to find out it was fool’s gold.”
Kylie learned she did have some kidney function, to the excitement of her nephrologist.
“(The nephrologist) didn’t want to see Kylie go through a transplant at such a young age,” Tonya said. “Once you have (a transplant) at her age, you will ultimately end up having to have another because (the kidneys) are not gonna last.”
While Kylie’s condition did improve for about eight months, the family’s good fortune failed to last, and in November 2018, Kylie’s creatinine levels once again began rising along with a decrease in hemoglobin and other signs and symptoms that her kidneys could no longer function on their own.
Throughout her improved health, Kylie and her family believed they would be prepared should her condition begin to worsen. Amanda had been approved as a donor, and the family had been assured that all they would need to do is schedule the transplant procedure should anything change.
“In January 2019, we made the decision to move forward with the transplant to avoid being put back on dialysis and any further decline in health,” Tonya shared in a Facebook post. “The transplant was set for March 7, one week from being a year since it was scheduled before.”
The family began prepping and planning for the transplant, only to learn that Amanda, who had been diagnosed with rheumatoid arthritis, could no longer be a donor due to the medications she had been prescribed or could potentially be prescribed for her condition.
“My sister’s always the one to jump up and do anything for me,” Kylie said. “I know she really wanted to (be a donor for me), and she was happy that we no longer had to worry about finding a donor. That chase is just grueling and hard to deal with when you’re depending on time, a lot of tests and all that. But, God has a reason for everything.”
After learning that Amanda was unable to be a donor, Kylie was placed on the transplant list and is now awaiting a donor.
Kylie currently receives lab work weekly. Should her condition worsen, she would be faced with dialysis yet again until she can find a donor match.
In an attempt to find a match, Tonya began a social media campaign, “Kylie’s Journal, A Mother’s Plea For A Donor,” in order to spread awareness and potentially find a donor for Kylie.
Already, Tonya has been in contact with three local citizens asking for details on how to become a donor. Unfortunately, Tonya said none of the three would be approved.
“I had never really needed that much help until all of this began,” Kylie admitted. “I never needed an outpouring of love and support, but all of this has made me thankful that even though my life has changed, I’m not alone in it. There’s a lot of people who would give up a part of their body for me at the drop of a hat if they could, and that means a lot to me.”
Anyone over the age of 60 is immediately denied as a donor, Tonya said.
“Her Dad is too old according to the age limit,” Tonya added. “For some of her other family members, the age factor has got them, or they have diabetes. Anyone that has diabetes cannot be a donor. There’s just been an array of issues that we’re now facing.”
For Kylie, finding a donor in the near future could mean never having to face dialysis again, which also plays a part in the urgency for a donor.
“That’s the plea,” Tonya said. “We need a donor, somebody to step up.”
“I’m just in a routine right now that deals with my health and I don’t get to focus on normal things anymore,” Kylie said of the wait. “I have to stay on top of being healthy.”
Despite her condition, Kylie remains positive, urging those who may be dealing with a similar issue to “never give up on themselves.”
“Just pray about it and believe that God will guide you,” Kylie said.
To learn more about Kylie’s journey or becoming a donor, search for “Kylie’s Journey, A Mother’s Plea” on Facebook.