In 1964, the year I was born, a diagnosis of cystic fibrosis was considered a death sentence – most children would not survive to school age. Yet… here I am at the ripe old age of 62. How can that be?

I believe a series of miracles over my lifetime has brought me to where I am today. The first was being removed from my birth family as an infant by Child and Family Services, resulting in me spending most of my first year of life at Sick Children’s Hospital in Toronto, where a new CF clinic had just opened under the guidance of Dr. Douglas Crozier. Coincidentally, another young CF patient was also on the same ward where her grandparents had come to visit her. It was during this time that the grandparents learned of my story and that I was to eventually go to a home for incurables. Well, they were having none of that! So at 50+ years old, having raised 4 boys, the youngest of whom was 21, they started the process of becoming my legal guardians. 

My guardians rose to the challenge of keeping me as healthy as possible. Daily medications, special diet, inhaled treatments, manual “clapping” to clear think mucus from my lungs and endless doctors’ appointments which required travel to Toronto from our home in Northwest Ontario. It was a huge cost and commitment on their part. Even with the extensive health regime that I required, they raised me to be strong and to believe that I could accomplish anything I set my mind to. 

In my early twenties, my father passed away quite suddenly from cancer. Shortly after, I was hospitalized because of a massive bleed from my lungs. My health was already precarious, I was under 100lbs and the result was a 6 week hospital stay. Many years later my mother told me that they thought I would not make it. After discharge, returning to work was out of the question and I ended up having to go on disability. My fiancé and I were in the midst of separating. This was definitely one of the lowest points of my life. 

Sheer determination kept me going. I knew things would get better… they had to! In my mid-twenties my health improved, I met a wonderful guy who eventually became my husband, and life was pretty darn good. After 10 years of stable health, things deteriorated. First came the incessant coughing, increased hospitalizations, home IV meds, increased physiotherapy and decreased lung function. Everyday life became harder. Next came oxygen only at night, then 24/7. By this stage the doctors suggested to me that it may be time to consider being listed for a lung transplant. I knew in my heart that this was coming but it was still a shock.

I was officially placed on the waitlist on my 36th birthday. Then, on July 27, 2003, my second miracle, a double-lung transplant after being on the waitlist for 3 years (by this time my lung function had dropped to 16% of normal). You can’t even describe your very first breath after they finally remove the oxygen. It is freedom! Post-transplant was like having a completely different life. However, the trade-off is the side effects of the anti-rejection medication, and general aging with CF has its own challenges not connected with transplant. But how amazing is it that I am even able to experience aging!

Transplant has given me an extra 23 precious years (so far!), and allowed me to continue on. In 2024, I turned 60 years old, along with it being my 20th year post transplant. Two huge milestones. 

To celebrate, I fulfilled a dream of travelling to Scotland solo. This was a trip about self-reflection, ancestry, finding myself and proving that I still had the courage to be adventurous. It was beyond expectations and made me realize how amazing life is, and has been, even with all its hardships. Everything that has happened to me has shaped the person I have become. I am proud of her and all she has accomplished in life. I very much look forward to what’s ahead!