From: Mayo Clinic News Network

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Chuck Boetsch's long journey to a successful lung transplant came to an end with a deep breath. That welcome breath was made possible by new technology that's making more lungs available for transplantation.

Chuck Boetsch’s long journey to a successful lung transplant came to an end with a deep breath. That welcome breath was made possible by new technology that’s making more lungs available for transplantation.


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, of Palm Harbor, Florida, will always remember that moment when he awoke on Dec. 1, 2017 — two days after lung transplant surgery at Mayo Clinic in Florida.

A winding road

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.”

A precarious situation

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.”

A focus on the future

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.

An optimistic outlook

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.


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