A KIDNEY FOR KAYLA
Published 8:00 am Thursday, February 21, 2019
- A Kidney for Kayla organizer Shana Warren at her home with some of the posters and tchotchkes that the group has used to grow awareness of Kayla Ransonet’s need for a new kidney.
Kayla Ronsonet is a pretty typical mom. She raises her two teenagers, working in the tax collection office of the Iberia Parish Sheriff’s Office to keep the family fed and warm. A native New Iberian, she has a ready smile and laid-back demeanor that helps put people at ease.
But underneath all that, Ronsonet struggles. She suffers from focal segmental glomerulosclerosis (FSGS) which is a scarring of the glomeruli, the tiny filtering units inside her kidneys that filter her blood.
“She is the kind of person who would never ask for help,” said her cousin Shana Warren. “She never wants to make anyone go out of their way.”
The disease led Ronsonet to her first kidney transplant almost 10 years ago, but it did not take.
“The kidney transplant became re-diseased six weeks after the transplant surgery,” Ronsonet said. “Through a procedure called plasmapheresis, Ochsner was able to prolong the life of the kidney by nine years.”
So she is looking for another kidney.
“I have a rare blood type and a high antibody level,” Ronsonet said. “That makes it harder for me to match with a donor. So far, I have been on the list about 2 1/2 years.”
Warren, who is the director of marketing for Superior Energy Services in Broussard, came up with a way to use her professional skills to bring awareness to her cousin’s fight. In November, she started “A Kidney For Kayla,” a public relations effort to help find a kidney donor and raise awareness for the challenges kidney patients face.
“It’s been great,” Ronsonet said. “Shana is doing a fantastic job. I’ve gotten great support from the community. In the Mardi Gras parade, we even had our own float.”
The float was part of Warren’s marketing outreach. She approached Mike Wattigny with the Bayou Mardi Gras Association and pitched the idea of “Parading with a Purpose,” using the parade as a platform for groups like “A Kidney for Kayla” seeking to raise awareness and accomplish a goal.
“They were great,” Warren said. “We had cups made up and had a contest to design the t-shirt everyone on the float wore.”
Even though most people have never heard of FSGS, it is the leading cause of kidney failure in adults. Not a disease in and of itself, the scarring can be a symptom of other kidney diseases. It is responsible for one in six cases of nephrotic syndrome.
Because her kidney function has basically ceased, Ronsonet has to spend nine hours a day on dialysis. With a full-time job and two teens, that’s a tall order.
“The biggest challenge is trying to arrange life around dialysis,” Ronsonet said. “I have to be home in time to get in the nine hours of dialysis I need, then be awake in the morning to get the kids out and go to work and be alert. Sometimes having an event or something that keeps me out late makes it hard to do that.”
Even with more than two years on the waiting list, Ronsonet knows it will take many more long days and nights before a kidney may be available.
“They told me it could be five to seven years,” she said. “And that is just an estimate. It could be longer than that.”
One of Warren’s goals with “A Kidney for Kayla” is to get people tested for compatibility as a donor for Ronsonet.
“The amount of people who have come forward to be tested has been amazing,” Ronsonet said. “Since we started in November, that I know of eight people have come forward. All they have to do is call Ochsner Multi-Organ Transplant Institute and say they want to be tested. They mail them a kit then find someone locally to take the samples and mail it back.”
Even if a direct match for Ronsonet cannot be found, Warren hopes that a donor can be found who will participate in a Paired Kidney Donation, or “kidney swap,” in Ronsonet’s name. That would give her a boost on the waiting list.
Warren is also using all of her best marketing concepts to raise awareness for Ronsonet. The group currently has a Facebook page (www.facebook.com/AKidneyForKayla) and is encouraging people to wear one of the group’s green lapel pins as conversation starters. She is also asking people to take their photos with #AKidneyForKayla signs and banners and post them to the social media page.
The next step, Warren said, is to form a non-profit to support the effort.
“A lot of people, you ask for help, and they immediately reach for their checkbook,” Warren said. “So we are thinking about a 501(c)3 to support that.”
The financial help would not be unwelcome. Aside from the cost of dialysis, Ronsonet has had to undergo six surgeries related to her struggle with FSGS and is currently on 12 different prescriptions daily.
But talking to her, you’d never know it.
“It’s hard having to commit to nine hours (of dialysis) every night,” Ronsonet said. “Especially while trying to raise two teenagers.”