Jody & Lauren Balaun

07/27/2017

Acceptance is unacceptable

After learning during a routine ultrasound that she and her baby girl had an incurable genetic disease that killed her father at 52 and her grandmother at 54, Jody Balaun focused on living life with purpose. She and her husband adopted another daughter from China, raised awareness and funds for the disorder, and made active family time a priority. But they always knew the disease would eventually show its ugly side.

“A month after I turned 50, a really big liver cyst ruptured, and that started an eight-year journey of excruciating pain,” Jody says. The disorder, ADPKD or autosomal dominant polycystic kidney disease, causes fluid-filled cysts to overcome the kidneys, expanding the fist-sized organs (sometimes to the size of a football) until they fail. Jody and her daughter Lauren have a rarer and more-aggressive type, ADPKD1,
which attacks other organs.

Soon unable to work her commercial-real estate job or continue her hobbies, Jody struggled to find good medical care, as her ballooning liver made eating difficult and breathing painful. Seeking help and hope, she was often sent away with a slew of pain pills and doctors telling her: “You just have to accept your plight.” Then a friend suggested Presbyterian/St. Luke’s Medical Center.

“At my first appointment, I met the whole team (led by renowned transplant and liver specialists Dr. Tom Heffron and Dr. Clark Kulig). That just doesn’t happen a lot,” says Jody, who was instantly struck by the team’s knowledge and all-inclusive care. “It was just a breath of fresh air. Not only do they work well together, but they like each other. There’s camaraderie, and that translates into exceptional patient care.”

The P/SL team, which Jody says does a lot more preemptively than many programs do, emphasizing quality of life, soon suggested Jody join the liver transplant list. During the two year wait, Jody became even more impressed with her care.

“The doctors would call me to check on me and encourage me. I could call the nutritionists any time, and they knew my case. Dr. Kulig set me up with a great pain specialist. They covered everything.”

Jody, whose transplant went well, has lost three inches in chest circumference since the surgery. Her donor liver will remain cyst-free, but she eventually will need a kidney transplant.

She says it’s a relief to know that both she and daughter Lauren, who remains symptom-free at age 25, will have outstanding care at P/SL as their diseases progress. “They feel like family there. As a patient who has a chronic, incurable disease, that is so comforting.”

A year post-transplant and weaned off the pain pills that had stifled her life, Jody says she never thought she would feel so well again. “I’m just more engaged. I’m back to work. I get to be a mom again. I get to be a wife again. At P/SL, they do care, and you just can’t fake that.”