Chuck Boetsch inhaled, drawing in a long breath for the first time in a long time. "My wife and two of my daughters were in my hospital room," Chuck says. "I took a deep breath, and I was overwhelmed."
Chuck's deep breath was the end of a journey that began in 2013 when he was living in Chicago and working as the CEO of a logistics company. "I was having shortness of breath," he says. "I initially thought it was just age-related, and I needed to exercise more. But as much as I worked out, my endurance and breathing didn't improve."
After multiple visits to several doctors, he was diagnosed with idiopathic pulmonary fibrosis — a disease that leads to damage and scarring of the lung tissue. The condition is the most common reason people need a lung transplant. It has no known cause or cure, and its progression is unpredictable. People typically live between three and five years after diagnosis, according to the American Lung Association, but some can live much longer.
"It's a delicate balance because donated lungs are such precious resources, and they have a limited life span."David Erasmus, M.B., Ch.B., M.D.
Chuck knew he would eventually need a lung transplant. But he also knew he wasn't guaranteed to receive one. And his path to transplantation was anything but direct. First he participated in clinical trials for new treatments of idiopathic pulmonary fibrosis, but they didn't slow the progression of his condition. Then after his daughter moved to Jacksonville, Florida, he began receiving care at Mayo Clinic. Still he wasn't immediately approved for a transplant.
"It's a delicate balance because donated lungs are such precious resources, and they have a limited life span," says David Erasmus, M.B., Ch.B., M.D., medical director of the Lung Transplant Program at Mayo Clinic in Florida. "You don't want to transplant people too soon. But at the same time, you don't want to transplant them when they're too sick and unlikely to survive."
By spring 2017, Chuck's lung function had dropped about 10%, and he was using supplemental oxygen when he slept. He started Mayo Clinic's evaluation process for a lung transplant, but another hurdle emerged.
"I had a 90% blockage in my carotid artery," Chuck says. "It caught me totally by surprise, and I had to do something about it quickly to reduce my risk of having a stroke."
That discovery also made him ineligible for a transplant. Chuck had surgery at Mayo Clinic to remove the blockage. It took him about four weeks to recover, and in a way, the hurdle may have worked to his benefit. While Chuck recovered, Mayo Clinic added a new surgeon, Si Pham, M.D., to lead the Lung Transplant Program in Florida.
"Only about 2,500 people each year receive lung transplants, and the need is far greater. I just feel tremendously blessed."Chuck Boetsch
Dr. Pham came to Mayo Clinic from the University of Maryland, where he established a reputation for success performing lung and heart transplant surgeries in complicated situations such as Chuck's. Drs. Pham and Erasmus, and the rest of the transplant team, reevaluated Chuck in September 2017. He was approved for a lung transplant and added to the waiting list.
After that, Chuck's condition continued to worsen. He was tethered to an oxygen tank for most of the day. He was called twice to Mayo Clinic for a transplant. But after further testing, the lungs for those procedures were determined not to be viable. Chuck received his third call on Nov. 28, 2017. This time, the transplant went forward.
When Chuck awoke after transplant surgery, he had a new right lung and a feeling he still has trouble describing. "Looking back, I was prepared physically, but I was unprepared for the emotional aspects of the whole experience," Chuck says. "Only about 2,500 people each year receive lung transplants, and the need is far greater. I just feel tremendously blessed."
The hurdles Chuck faced are far too common for patients and medical teams looking to save lives through lung transplantation, say his physicians. Most of those challenges emanate from a central problem: the scarcity of donated lungs that are viable for transplantation.
Chuck's story also includes a potential solution. He received his lung through a clinical trial at Mayo Clinic that is testing a new system using ex vivo lung perfusion. The technology gathers information on lungs that otherwise would not be used for transplantation. The lungs are recovered using the standard transplantation protocol. But then they are sent to a facility where they are perfused and ventilated to mimic the way they would work inside the human body. Data from that additional testing helps the transplant center reassess the lungs and their viability for transplantation.
"About 25% of donated lungs meet the criteria for transplantation. But with this system, we think we may be able to increase that to about 50%."Brandi Zofkie
"My doctors asked me how I felt about receiving a lung through that system, and to be honest, I preferred it," Chuck says. "The lungs are pressure tested, load tested, flushed and thoroughly evaluated. I felt they had a better chance of performing well versus lungs that don't go through that process."
The technology driving the clinical trial is from Lung Bioengineering, a company based in Silver Spring, Maryland. Specialists from the company and Mayo Clinic physicians believe the technology could significantly increase the supply of lungs that are viable for transplantation.
"About 25% of donated lungs meet the criteria for transplantation. But with this system, we think we may be able to increase that to about 50%," says Brandi Zofkie, an ex vivo lung perfusion specialist at Lung Bioengineering. "In addition, we're extending the window for transplantation much longer — from about six hours from the moment a lung is donated to a maximum of 22 hours."
The company and Mayo Clinic believe so strongly in the technology's potential that they collaborated and built a lung bioengineering center at Mayo Clinic in Florida. The new facility will provide services to multiple transplant centers. Eventually, it could process about 900 lungs a year. As the practice grows, additional Lung Bioengineering centers will be built across the country to further reduce shortages.
Since his transplant, Chuck is playing golf, spending time with family, traveling and living life with few limitations. He's also trying to give back. He has met the family of his lung donor and communicates with them regularly. He also volunteers for organizations that promote organ donation and shares his experience with people who are awaiting transplantation.
"I feel like I will have many more years of quality life. By then, I am confident my doctors will have other options for me and people everywhere who are in my shoes."Chuck Boetsch
Chuck knows he may need another transplant at some point. He still has idiopathic pulmonary fibrosis in his left lung, and transplanted lungs don't last forever. But he has hope.
"I feel like I will have many more years of quality life. By then, I am confident my doctors will have other options for me and people everywhere who are in my shoes," Chuck says. "Words alone can't express my gratitude to everyone — my donor, the recovery team, the people who engineer the lungs, and the entire transplant team at Mayo."
Note: A version of this story previously was published in Mayo Clinic Magazine.