If you were to speak with Jeff, 32, a financial professional from Westlake Village, CA, you’d be hard pressed to guess that he was ever sick. In fact, although he is now a happily married father of one, Jeff has been living with cystic fibrosis (CF) for his entire life and things were very different just two years ago.
When Jeff was growing up, like many young people living with CF, he was relatively unaffected by his condition. “When I was 10, my parents explained CF, but they were always incredibly supportive and made it clear that they would help me live as normal a life as possible,” Jeff explained. “My parents introduced me to sports and physical activities because they’re a big part of normal childhoods. I played hockey, soccer and practiced jujitsu.” Although Jeff knew lung transplantation was a reality for some CF patients, he was also aware of developmental treatments and was optimistic that there would be a cure before that time came.
Jeff’s lung capacity slowly declined over time and he ultimately had to quit competitive sports during college because his respiratory endurance was significantly impaired. While he was still able to casually participate in athletics, his condition deteriorated in 2012, severely limiting his physical endurance and exercise capacity. When his lung collapsed abruptly in April of 2013, he was faced with the gravity of his situation and learned he needed a lung transplant. His doctors put him on the waiting list.
“I was at the point where I needed oxygen around the clock. Eventually, I couldn’t even walk a few feet, or use the elliptical machine for a few seconds, without having to stop to catch my breath.”
In order to become healthy enough to undergo lung transplant surgery, Jeff needed to exercise, but cumbersome oxygen equipment and an already diminished respiratory capacity had made mobility nearly impossible. To address these problems, Jeff’s doctors and care team decided the best thing for him was to begin treatment with Breathe Technologies’ one-pound wearable ventilator (Non-Invasive Open Ventilation (NIOV) System). He began using the device with standard oxygen therapy six months after being put on the transplant list.
“It was like night and day,” Jeff recalled. “Following treatment with NIOV, I could carry items up the stairs, instead of barely being able to climb them. And now I could spend five or more minutes on the elliptical machine, when before just being on it for a few seconds was impossible. Also, I was sleeping well again for the first time in months.”
The Breathe NIOV ventilator helped Jeff so much that he always made sure it was charged and on his person at all times. Eventually, when he and his wife were married in February, 2014, he was even able to go on a honeymoon while waiting for surgery, because his lung function had been stabilized and his endurance for physical activity improved.
Jeff had successful lung transplantation surgery in December, 2014, noting that “if I didn’t use the NIOV, at the rate I was going I wouldn’t have made it another 6 months, let alone a year and a half and still strong enough to survive the surgery.” While Jeff no longer needs to use the NIOV post-transplant, he stated, “Because I had the device, I was able to stay strong, which was a tremendous part of me recovering so well, and also keeping me alive that much longer.”
Two months after his lung transplant surgery, Jeff and his wife had their first child. While Jeff will always have CF, he has been increasingly active and is able to meet the hectic demands of life as a new father.
And he even finds the time to support to other people awaiting transplant. Even before his surgery, Jeff has been a mentor to other young people awaiting lung transplantation.
“It’s something I feel strongly about. A way to give back,” he said. “I am fortunate enough to be in a position to help some of my friends, who are faced with the challenges of being pre- or post-transplant. Having gone through this, I’m glad to have an opportunity to answer questions and be there for support.”
Asked what advice he’d give for others who are candidates for lung transplantation, “I’ve been very lucky, and had access to the right care, the right technology and the right timing. It’s a very scary process, but it’s important to remain optimistic. This is treatable and life can go on.”
In the near future, Jeff hopes to be able to continue the conversations he has had with the Lung Transplant Foundation (LTF) about starting a local chapter of the national Foundation in order to provide support to people living on the west coast who are waiting for surgery. Based in Raleigh, NC, the LTF’s mission is to promote and advance research in order to improve long-term outcomes among lung transplant recipients and to educate and promote awareness about organ donation. For more information please visit www.lungtransplantfoundation.org.