Kaelyn Connelly, now a graduate from Tivy High School, has plans for her future that include leaving Kerrville for college and studying to be a professor of English.
But first she has to overcome renal failure and dialysis treatment, and still needs to receive a transplanted kidney.
With her mother Kathy leading the day-to-day fight and watching over her daughter’s health and schedule, Kaelyn graduated from THS in May.
She said she was ranked 110th in her class of more than 300 fellow graduates.
“She’s fearless and strong and focused. She loves reading and writing. She’s that kind of person,” her mother said.
And three days a week Kaelyn’s mother still drives her to dialysis treatments in San Antonio.
That has continued through the recent weeks and months of COVID-19 restrictions, she said, a necessity for Kaelynn; and the treatment hospital in San Antonio has continued to operate.
But the virus precautions stopped the procedures three months ago that were used to test possible donors; and Kathy said the last four or five possible donors who signed up previously were each scratched from the list for various reasons.
Recently Kaelyn and her mother met with a geneticist in San Antonio and they discussed him studying Kaelynn and her case to determine if her renal failure is a result of genetics or of her environment – new tests and previously not factors they considered.
But that doctor’s findings could have some bearing on Kaelyn’s transplant and her future.
“He’s optimistic,” Kathy said.
The testing procedure is open again now. So they need to start over to try to attract new possible donors to sign up and get each of them tested as living donors to benefit Kaelyn and other kidney patients.
Any adults who would be willing to sign up and be tested should visit the following website via a computer, and follow the instructions for the online survey.
Kathy said this site includes a fill-in-the-blank form that’s easier for people to complete as possible donors.
Where the choice is allowed, mark “living kidney donor.”
The form includes spaces to fill in a box for “named recipient” and the first and last name of the preferred recipient, Kaelyn Connelly.
“At the hospital, I put on a hospital gown and they take my vital signs. They hook me up to a machine that filters my blood,” Kaelyn said. “That takes three hours.”
She said these treatments give her more energy and when she’s home she doesn’t want to sleep all the time.
“I want to go to college and major in English,” Kaelyn said.
In light of the recent delays looking for a donor, Kaelyn has altered her college plans temporarily.
“It’s still ‘Southwestern or bust’ for her but she’s changed her path to get there,” Kathy said.
Kaelyn said she’s now set up for some online classes through University of Texas at San Antonio in August; and may take a couple summer classes through San Antonio College.
“My major is still the same; and this is one way I can get to Georgetown,” Kaelyn said.
Her mother’s story
“We’ve been thrown into this since October 2019,” Kathy said. “I took her to a chiropractor because I thought she was walking funny. He took X-rays and did some blood tests. That was Oct. 2, and he called on Oct. 3. I could tell something was wrong.
“I picked up Kaelyn from school, after he sent her report to a doctor in Fredericksburg. That doctor told me to take her immediately to Methodist Children’s Hospital in San Antonio,” Kathy said. “They scheduled surgery the next morning to put in a catheter. And she was in the Intensive Care Unit for nine days. She also was anemic and got transfusions.”
Since then Kaelyn has been to dialysis in San Antonio each Monday, Wednesday and Friday at University Hospital. Her team of physicians includes a group of three nephrologists plus a dietician, social worker and case worker.
Kathy said she and Kaelyn have been told they should be looking for a living donor.
“Kaelyn has B-positive blood, but we also are looking for a donor with O-positive blood,” she said. “If somebody wants to be tested or agree to give a kidney, there’s no cost to the donor.”
She said they learned of another form of treatment on a machine, every night for 10 hours, and the patient never gets to go anywhere.
“Kaelyn doesn’t want to have a bunch of surgeries. But dialysis is not a long-term solution for her either.”
Kathy works in the office of a local Kerrville attorney, and said she has no health insurance. But she learned that patients with in-stage renal failure could automatically be approved for Medicare under current law.
While that partially solved the family’s problem, Kathy has been driving Kaelyn to and from her appointments; and putting 400-plus miles per week on their vehicle.
“We’re constantly on the road and filling the car with gas, and grabbing meals.
“But to look at her, you wouldn’t know she was sick. My daughter would like to have surgery as soon as possible and before college starts. But she’s getting started on college classes.”
Kathy said if you have a match, you have more control over when it’s done. If the kidney comes from a cadaver, there’s more risk of unknown behaviors by the donor.