Nolan Gottlieb is Still Living Life to the Fullest, Despite the Toll of Cystic Fibrosis
The first day Nolan Gottlieb worked out with the men’s basketball team at Anderson University, he had one request for the coaching staff: “Don’t mention my cystic fibrosis unless I bring it up first.”
They honored that request, even when he came to practices with an intravenous catheter in his arm and, in one instance, coughed up blood during a drill. Nolan pushed himself physically and mentally on the court, ultimately making the varsity team both his junior and senior years. He continued to push himself after graduation and beyond until finally, it wasn’t enough.
Nolan, who lives in Athens with his wife Maggie, always knew that he may need a lung transplant, but it wasn’t until he was 34 years old that his lung capacity declined to 30%. At that point, his lung specialist, David Neujahr, MD, of the Emory Transplant Center, said it was time to be put on the waitlist for a lung transplant.
A Lifetime of Breathing Issues
Nolan was diagnosed with cystic fibrosis (CF) when he was three months old. The rare genetic condition causes mucus buildup in the lungs, pancreas and other organs. Thick, sticky mucus clogs the airways and lungs and makes breathing difficult. CF also interferes with digestion and weakens the immune system.
For the first decade of his life, Nolan’s symptoms were manageable thanks to specialized care at Egleston Hospital in Atlanta and daily medication to help with digestion. But in middle school, the disease began to progress. At age 16, Nolan started using a feeding tube at night to get the nutrition he needed to grow. Within six months, he had shot up five inches and gained 25 pounds—perfect for someone who dreamed of playing college basketball someday.
Nolan played junior varsity his first two years at Anderson and also worked out with the varsity squad. His coaches, recognizing Nolan’s hard work and dedication, put him on the varsity team his junior year. And then gave Nolan a scholarship to play his senior year.
Meanwhile, cystic fibrosis continued to clog Nolan’s lungs and sap his energy—but he never let it keep him from pursuing his goals. After graduating with a degree in kinesiology in 2006, Nolan became a teacher.
A 17-Month Wait
As the years went by, Nolan’s health continued to decline. He started care at the Emory Transplant Center with pulmonologists from the Emory Lung Transplant Program.
“Getting a double-lung transplant always seemed like something that could happen a long way down the road,” Nolan says. “Even when Dr. Neujahr recommended I go on the waitlist, it never occurred to me that I could die from CF. But I certainly could have.”
During the 17 months that Nolan waited for his transplant, his lung capacity declined to 17% and he went on supplemental oxygen full time.
“It was frustrating to wait, but the Emory transplant team was fantastic,” Nolan says. “They were thorough with my care and helped me know what to expect. I just tried to stay as active as possible and not dwell on what could happen.”
The call came in at 4 a.m. one day in June 2018, and within 24 hours Nolan had two new lungs. He was out of the intensive care unit in 11 days and discharged home in less than three weeks. That said, his first few months after surgery were challenging—he experienced digestive issues, nerve pain and pneumonia. But if given the choice, Nolan says he’d do it all over again.
“After I recovered from surgery, my lung capacity was over 100% and, for the first time in many years, I could draw a full breath,” Nolan says. “Knowing what normal feels like now, it seems impossible that I played college basketball with CF.”
An Active, Normal Life
Nolan still takes medication to prevent the rejection of his new lungs, but his lungs are free of the disease (and doctors expect them to stay that way). He transitioned from teaching to a career in real estate since he could not be around sick children while on immunosuppressant medications.
Nolan continues to be active—this past summer, he and Maggie hiked 48 miles in three weeks at an elevation of about 10,000 feet in Wyoming. It was an experience that many people would find taxing, but not Nolan, who said he “didn’t feel tired at all.” Next year, he hopes to participate in a triathlon — his second—as well as some half-marathons.
Meanwhile, Nolan returns to Emory Transplant Center for follow-up care every three months or so.
“I’m so grateful to the transplant team at Emory for all their support over the years,” he says. “I hope my story encourages other people who are on the waiting list or considering getting evaluated for a transplant. The recovery can be tough, but it’s totally worth it on the other side.”
About Emory Lung Transplant Program
Emory Transplant Center offers the only Lung Transplant Program in Georgia. Our program specializes in the treatment of complex lung disorders and offers the full continuum of high-level care involved in lung transplantation. Performing more than 500 lung transplants, we are at the forefront of clinical excellence, innovative transplant therapies, and outstanding pre- and post-transplant care.
For more information about Emory Transplant Center and our Lung Transplant Program, call 855-366-7989.
