Sandra’s Story

APRIL 16, 2023

I have to say that I am very lucky to still be here to this day. When I was born, the life expectancy for a person with cystic fibrosis (CF) was just 20 years. This year, I turn 36. 

In 2017, I went to the CF clinic for my annual treatment of intravenous antibiotics, which I like to call my “spring cleaning.” It was a routine procedure and I usually see improvements in my health within two weeks. Unfortunately, that wasn’t the case this time. My condition was worsening to the point where the doctors at the CF clinic decided to put me on the lung transplant list. I was told that the wait for my group would be about 1 to 1.5 years. Honestly, I wasn’t sure if I was going to make it to the surgery. My health continued to deteriorate, and it was becoming worrisome. I was transferred to the emergency transplant list and received a double lung transplant two weeks later. 

The first thing I noticed when I woke up from surgery was that my cough disappeared. I didn’t feel like I was constantly fighting for my breath – it was a game changer. I’ve never known what it was like to have normal lung function. The simple things in life – eating, bathing, brushing your teeth – can become complex and difficult with CF. But in that moment, I experienced what it was like to breathe. I am so grateful to have had this second chance – as not many make it to the transplant list, let alone the surgery. 

However, a lung transplant is by no means a cure. I still live with the burden of CF every single day. 

The first time I realized how much of an impact this disease had on my life was when my husband and I decided to have children. There was a huge concern for how pregnancy would impact my body. We went through three artificial inseminations and three in-vitro fertilizations – one of which worked for eight weeks. I couldn’t help but wonder how I was going to get to term. All things considered, we eventually decided not to have children for the sake of my health. It was a painful decision to make as I knew how important it was for my husband to start a family with me. Nevertheless, we have each other and our wonderful friends and family who’ve supported us every step of the way.

For the past 30 years, my family and I have been raising funds in support of Cystic Fibrosis Canada to help invest in CF research and advancements. Research has gotten us to where we are now, and has changed the lives of many Canadians living with CF through effective modulator therapies such as Trikafta. We’ve seen spectacular progress throughout the years, but we have not yet found a solution that will benefit everyone. 

As a lung transplant recipient, I’m not eligible for Trikafta. I must admit that I am curious and have been wondering for a long time whether it would work for me. I would have liked to have had access to this drug sooner if it meant that I could have postponed my lung transplant and could continue living my life as normally as possible. Even so, I’m incredibly happy for the people who finally have access to this drug, and I’ll continue to support the researchers who work endlessly to find something that will work for all Canadians living with this disease. 

Donating is a wonderful way to help invest in CF research and advancements. Any way that you can support Cystic Fibrosis Canada gives all of us living with CF hope for the future. Please give today!