This painting reflects a moment that was 41 years in the making. A completed 5k Christmas Elf run in December of 2021, the first one I had ever done. When I signed up to do it with my then 8 year old, little did I know that less than a week before the race I would have the chance to start a medication that would change my life. For the first time in my life I was able to run without coughing at all, with only a few walking breaks. I had never experienced that before. In 7 days I went from coughing and coughing up sputum with any amount of exercise to not one cough the whole run. I had a wow moment after the race when I realized I didn’t cough the whole run, it was kind of surreal. In less than a week my lungs were acting like ‘normal’ lungs. It was and still is life changing. In the back of my mind I always wanted to be able to run for any length of time without hacking up a lung and thanks to Trikafta that has happened.

I have always been an active person. When I was growing up I played Ringette, golf, baseball, softball and skied. My cough never stopped me and being so active kept me healthy, even before I was diagnosed at 8 years old. I was a puzzle for our family doctor, my parents knew something was wrong with me, but they didn’t know what. I don’t think I had any of the obvious signs of Cystic Fibrosis. I was a “kielbasa baby” with rolls and a good appetite, and very active. I honestly don’t know or remember what other things the doctor thought was the issue before they ordered a sweat test to see if I had CF. Now, the sweat test... It was 1988, so before the fancy technology they use today for the tests. I literally had gauze taped to my inner elbow and had to sit in my Mum’s car with the heat cranking and bundled up in winter jackets. I had to stay like that until the gauze had enough sweat on it to test. When the doctor finally told my parents the diagnosis, I remember him apologizing for not figuring out what was wrong sooner. I can only image the stress of years of unanswered questions my parents dealt with.

From then on my life changed. I started taking digestive enzymes with every meal, I needed chest physiotherapy twice a day, which had to be done by my parents. My teachers had to get pamphlets about CF. This disease taught me how to be responsible, but also determined and how to deal with hard things. As the years progress I had added more medications to keep me healthy, until the past year or two when I have actually been able to stop some medications, thanks again to Trikafta.

I have had my share of hospital stays and home IV antibiotics and as tough as that has been I am thankful that they happened when I was older and able to cope better with being that sick. I went through a stretch in 2016-17 where I needed 8 rounds of IV antibiotics that was unbelievably tough, especially when I had a 3 year old at home. I have come out the other side and cannot believe how much my quality of life has changed in just over 4 years.

I never let my CF hold me back, but now the future doesn’t seem like something that is in question. I think every person with a Cystic Fibrosis always has their mortality in the back of their mind. It is still there these days, but not as looming.
Hopefully, there is a pot of gold at the end of the rainbow.