DECEMBER 15, 2022
When I was diagnosed with cystic fibrosis (CF) at six years old, it probably came as a bit of a relief to my parents to finally understand why I had the health problems that I did.
Thankfully, from the time I was diagnosed until I was around 16, I don’t feel like my life was much different than my peers. I enjoyed swimming, figure skating, bike riding and being a Girl Guide. The only thing that set me apart from the other children was having to take my daily medications and do physiotherapy twice a day. Other than that, my childhood was as close to “normal” as it could have been.
As I entered adulthood, that’s when things started to get more complex. My life looked completely ordinary on the outside – I was married, I owned a house, I had a job, etc. However, the complications of CF began to weave their way into my life and eventually took over despite my efforts.
On Christmas Day 2001, I received a double lung transplant. At that point, I had a very low quality of life, and we knew that the end was getting closer. I had 17% lung function, and I was on 24-hour oxygen. I relied on tube feeding and was in – and out of the hospital frequently. After receiving the lung transplant, I felt completely different. It was absolutely amazing to be able to breathe again – something that most people without CF take for granted.
The first 10 years after my procedure were fairly smooth. I barely coughed, I no longer had to do physiotherapy and, overall, I felt great! Unfortunately, the last 10 years have been a bit more challenging. I was diagnosed with cancer and developed bacterial infections resulting directly from the transplant. Additionally, my lung function is back down to 60% and my weight is much lower than I’m comfortable with. Although my health has been very unpredictable, I am still enjoying this second chance I was given and am very grateful to my transplant donor.
When it comes to CF research, I think that researchers are at a point now where they will be able to concentrate their efforts in a completely different direction than they have in the past. They can now build upon what they have recently learned from the discovery of current modulator therapies like Trikafta and continue to find a way to find new treatments for everyone with CF, and even end CF once and for all.
It was extremely devastating and disappointing to know that a “miracle” drug is available only to find out it won’t work for me because of my transplant. Just because it works for the majority doesn’t mean our work is done. Our community needs to work together to continue to fund CF research and fight for access to medicines. We are not done – not until all Canadians living with CF are given the opportunity to live longer, healthier lives.
My hope during the holiday season is continued and improved health for myself, my family and all others affected by CF across Canada. We need your help to make this happen. Donate now.