Living with CF After Transplant

A Childhood Shaped by Cystic Fibrosis

Before I was born, my parents underwent genetic testing and knew there was a possibility I would be born with cystic fibrosis (CF). I was diagnosed at just two months old. Growing up, I spent a lot of time in hospitals, and with every CF clinic visit, my lung function seemed to drop a little more.

I wasn't able to experience a typical childhood. While other kids were busy playing sports and keeping up with their friends, I often couldn't. CF affected nearly every part of my life from a young age.

When Everything Changed

In 2015, one of my lungs collapsed while I was living in a college dorm. Struggling to breathe, I rushed into the hallway and began knocking on doors until a group of paramedic students answered and helped me. I was taken to the hospital, where doctors confirmed the collapsed lung and inserted a chest tube. As my condition worsened, I was transferred to the ICU and placed on bilevel positive airway pressure (BiPAP) therapy, but despite every effort, my lung collapsed again.

At that point, a double lung transplant became my only option. While transplant assessments can often take months, mine was completed in just a few days, and I was listed as top priority on the waiting list. 14 days later, I received the call that donor lungs had become available. Following an eight-hour surgery, I experienced acute rejection and spent four weeks on a ventilator with a tracheotomy. Through it all, the physiotherapy team encouraged me to keep fighting and rebuilding my strength. Six weeks post-transplant, I got to go home.

They told me my new lungs would last 10 years. But they only lasted two.

In 2017, I suddenly lost my breath while I was at my boyfriend’s house. By the next morning, even walking up a flight of stairs felt overwhelming. At the hospital, I learned my lung function had dropped by 30% and that I was in rejection. I was transferred to Toronto General Hospital, where it was determined I would need a second double lung transplant. This time, I was able to spend most of the wait at home until my oxygen needs became too high and I required IV nutrition. In early June, I received my second double lung transplant. After another six weeks in hospital, I came home that September and have been relatively healthy since.

What Life Looks Like Today

Managing my health remains a daily commitment. Every day, I take my transplant medications twelve hours apart. I also rely on several inhaled therapies, including Ventolin, Trelegy, and TOBI Podhaler, as part of my ongoing treatment routine. After my first transplant, I was also diagnosed with cystic fibrosis-related diabetes (CFRD).

As an athletic therapist, I spend my days constantly on my feet, working closely with athletes. With my lung function continuing to decline, the physical demands of the job can be difficult, and my body often struggles to keep up. But despite the challenges, the athletes I work with inspire me and keep me going.

“Cystic fibrosis is a full-time job, but so is a transplant.”

Not a day goes by that I don’t think about my transplant donors. Without them, I wouldn’t be the person I am today or have the career I love. Without my lung transplants, I wouldn’t have had those extra years with my mom before she passed away. While I’m incredibly grateful to have received a double lung transplant, I know it is not a cure.

Your ongoing support makes a difference in ways that are difficult to measure. Every gift helps create more time, more opportunities, and more possibilities for people living with cystic fibrosis. It gives the CF community something invaluable: extra days, extra years, and hope for what lies ahead.