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Gratitude inspires
stories of hope

Ron and Deb Cizek

The Road to Recovery

When we finally got in touch with Barnes-Jewish Hospital, our lives really did turn around,” Deb says. “From the very beginning, they gave us hope that there was a chance. It felt like through the whole thing that they cared about us.

Deb Cizek

Ron Cizek, a longtime hot rod enthusiast, got his start in the world of custom cars when his father purchased a 1940 Ford Coupe in 1957 for the pair to work on together when Ron was just 10 years old. Many years later, when Ron entered the hot rod in the 2013 Detroit Autorama—known as the Super Bowl of the hot rod world—he took home the top prize.

Today, after facing a life-threatening disease and a double lung transplant, he’s no longer satisfied to sit on the sidelines. He’s leaving a legacy for future lung transplant patients through his giving to The Foundation for Barnes-Jewish Hospital—and following his wildest dreams.

In April of 2016, Ron and his wife, Deb, were on a trip to Santa Fe, New Mexico, a favorite destination for the travel-loving couple. During the vacation, Ron began to feel ill. “It came out of nowhere,” Deb says. “He was perfectly healthy and then all of a sudden we discovered he had a disease neither of us had ever heard of before.”

It turns out Ron had idiopathic pulmonary fibrosis, a condition that causes scarring on the lungs for no known reason.

His only hope was a double lung transplant—but physicians in Omaha, near his hometown, told him the procedure would be too risky and refused to operate. “They pretty much wrote me off and told me to go home and get my affairs in order,” Ron says. “Of course, we didn’t like the sound of that, so we did some research and went to see physicians in Denver.”

But, the news in Denver was equally disheartening; after some initial testing, the medical team also declined to perform the necessary transplant.

“It was like opening a college acceptance letter,” Deb says. “You run to the mailbox and you open the envelope, and they say, ‘We’re sorry, but we’ve turned you down.’ Except that we were talking life and death. It was incredibly difficult.”

By that time, Ron’s condition had deteriorated to the point that he could barely walk one mile per hour on the treadmill. His time was running out.

Finally, a glimmer of hope arrived in the waiting room at the Washington University and Barnes-Jewish Hospital Transplant Center, where he was referred to leading experts in pulmonology and lung transplantation: Derek Byers, MD, and Daniel Kreisel, MD, PhD, the G. Alexander Patterson, MD/Mid-America Transplant Endowed Distinguished Chair in Lung Transplantation.

The transplant team at Barnes-Jewish is a life-saving resource for patients with complex conditions who are turned down as transplant candidates at other institutions. The expertise and experience of the physicians—and the volume of transplants performed—make it one of the highest performing transplant teams in the country.

Ron was placed on the list to await his double lung transplant. When he found out he had a match, the excitement was palpable. “If I could have jumped up and down, I would have,” he says. “But by that time, I needed a lot of oxygen, so the best I could come up with was a smile. I was elated.”

The wait paid off and the transplant was a success; Ron felt better almost immediately. “I woke up a day or two later and I could breathe,” he says. “I was so grateful to be alive.”

The Cizeks decided to show their gratitude for the transformative double lung transplant by giving back to support research and patient care through The Foundation for Barnes-Jewish Hospital.

Their gift will help Dr. Kreisel and Dr. Byers and their teams accelerate research projects to identify new cellular and molecular pathways that could be targeted to develop new therapies, and train future leaders in lung transplant medicine.

“While we’ve made important advances in surgical techniques and management of transplant patients, we still have a long way to go,” says Dr. Kreisel. “The five-year survival rate after lung transplantation is only 40 to 50 percent. And one reason that the results are not as good as we would like them to be is that we do not fully understand the biology of lung transplantation. Therefore, investment into research is critical to develop new therapies and to improve the lives and survival rates of our patients.”

He adds: “The future of transplantation is very bright. I think we’re going to get to a point where we can personalize transplantation by tailoring and modifying donor organs to fit the biology of the recipient and improve outcomes.”

The couple is grateful for the surgery that saved Ron’s life—and the precious gift of more time.

“It’s changed our life,” Ron says. “I don’t let grass grow anymore. If we want to go somewhere or do something, we do it. Because you just never know how long you’re going to be around.”

In this spirit, he recently celebrated his two-year transplant anniversary and is working to check off items on his “bucket list.” One is to drive his car to a new world record of 300 mph at Bonneville Speedway, a track known as the location of many land speed records.

For Ron, after flirting with death and undergoing major surgery, there is no obstacle too big to overcome.