Chuck Boetsch inhaled, drawing his breath in deeply 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, now 73, of Palm Harbor, Florida, will always remember the act — so often taken for granted — when he awoke on Dec. 1, 2017, two days after lung transplant surgery at Mayo Clinic’s Florida campus.
A Winding Road
That first breath was an end to a journey that began in 2013, when Chuck was living in Chicago and working as the CEO of a logistics company.
“I was having shortness of breath,” Chuck 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. IPF is the leading cause of lung transplantation. The disease 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.
Chuck knew he would eventually need a 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 for IPF, 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 B. Erasmus, M.B., Ch.B., M.D., medical director of the Lung Transplant Program at Mayo Clinic’s campus 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.”
A Precarious Pendulum
By the spring of 2017, Chuck’s health began to swing precariously along that pendulum. His 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 then 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.”
The discovery also made him ineligible for a transplant.
Chuck had the 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.
A New Teammate
While he recovered, Mayo Clinic added a new surgeon, Si M. Pham, M.D., to lead the Lung Transplant Program in Florida.
Dr. Pham came to Mayo Clinic from the University of Maryland, where he established a reputation for his success performing lung and heart transplant surgeries in complicated situations such as Chuck’s. Dr. Pham, Dr. Erasmus and the rest of the transplant team reevaluated Chuck in September 2017 and approved him for a lung transplant.
Chuck’s condition was worsening. He was tethered to an oxygen tank for most of the day. He was also called twice to Mayo Clinic for a transplant procedure. But after further testing, the lungs for those procedures were determined to be nonviable. He received his third call on Nov. 28, and two days later he awoke with 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.”
Future Focus
The hurdles Chuck faced are far too common for patients and medical teams looking to save lives through lung transplantation, say his physicians. And most of those challenges, they say, emanate from a central problem — the scarcity of donated lungs that are viable for transplantation.
But 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 in the United States using ex vivo lung perfusion (EVLP). EVLP is a technology used to gather more information on lungs that would not otherwise be used for transplantation. The lungs are recovered using the standard transplantation protocol but then sent to a centralized facility where they are perfused and ventilated, similar to the way they would work inside the human body. Data from this additional testing helps the transplant center reassess the lungs and their viability for transplantation.
“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 there and Mayo Clinic physicians believe it has the potential to 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 EVLP 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 on Mayo Clinic’s Florida campus.
The new facility in Florida will provide EVLP 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.
One Day at a Time
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 to share his gratitude for the gift of life he has received. He also volunteers for organizations that promote organ donation and shares his experience with people who are awaiting transplantation.
Chuck also knows that he may need another transplant. He still has IPF 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,” Chuck says. “By then I am confident my doctors will have other options for me and people everywhere who are in my shoes.
“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.”
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