“Dialysis is the most depressing and time-consuming part of this stormy season of my life,” says Kaci Jackson-Mileham, who has been waiting for a transplant since September 2021.

Jackson-Mileham was diagnosed at age seven with polycystic kidney disease. Her younger brother has the same disease.

“I was told the form of the disease I had would not cause me any problems until later in life,” she says. “I lived a pretty normal life with hardly any complications.”

At the age of 18, Jackson-Mileham partnered with IU Health Arnett nephrologist James Sutton, MD, for her care. He felt her kidney function was good and she had no major issues. Even during her first pregnancy, things were mostly ok.

Baby number 2 changed things

The plan she discussed with Sutton and her IU Health Arnett obstetrician Noel Wallace was to not have any more children due to the impact it could have on her kidneys. But life had other plans.

“I cried when I found out I was pregnant,” says Jackson-Mileham, whose kidneys began to decline by month seven of her pregnancy. “Dr. Sutton was very caring, very hands-on and explained that my disease is my disease. It will progress on its own time. Whichever way it goes, he was there to support me.”

Dialysis becomes a full-time job

On March 25, 2021, after the birth of her second child, it was time to begin dialysis.

“I was scared,” says Jackson-Mileham. Her brother was already on dialysis, so she understood what was coming. “I had a new baby at home. How was I going to do all this?”

When she arrived, Sutton was there waiting for her. He carried her bag to the room and stayed with her while the nurses did their prep work, then escorted her to her first appointment.

“He was very comforting and genuine. He held my hand the entire time, almost like a dad,” says Jackson-Mileham. “Dr. Sutton reminded me that I was so young and had so much life ahead of me. I realized he was right, and I could do this.”

She then transitioned to outpatient dialysis, which takes four to six hours each day — almost like a full-time job for a new mom who was on maternity leave from her full-time job.

“Dialysis is very emotional for me because most patients doing dialysis are near the end of their life,” says Jackson-Mileham. “Dr. Sutton visited me every week.”

Worries for the future

Jackson-Mileham’s brother died in December 2022. The loss has been hard on her — and on her oldest daughter, Abi.

Genetic testing has revealed Abi has the same disease as her mom, but her younger daughter (pictured at top of page) does not.

“This has been really hard on Abi,” says Jackson-Mileham. “When she was seven, she wanted to take my place so she could take away the pain. Now she wants to know if she will end up like her uncle Bubba.”

Abi plans to become a nephrologist like Sutton so she can cure her mom.

Waiting for a transplant

“A transplant would mean the world to me,” says Jackson-Mileham, who spreads the word online with the hashtag #KidneyforKaci. “I could be a better mom. A mom with more energy to do things with her children. I want more than anything to watch my girls grow to be women and fulfill their dreams. I fear without a transplant I’d be robbed of watching them continue to grow.”

Interested in giving the lifesaving gift of a kidney donation? Learn what it means to be a living donor.