Best Friends With CF
Last updated: February 2023
As a CF patient, one of the most heartbreaking realities is you must stay at least six feet apart from other CFers. I am willing to bet that 85% of us have a best friend who also has CF. Mine is Sarah-Lynn.
CF diagnosis and transplants
Admittedly, you were a legend in my eyes. You had your first transplant while still a patient at Sick Kids Hospital. My mindset during my last years at that hospital was what I would tell my friends where and why I disappeared for 2-3 weeks at a time. It didn't take long for me to get used to you being open with me about your life and living with CF. Because of you, I have been able to help people express and process their lives living with CF, and as a transplant patient.
I really did not have time to really process everything that was going on, and what was going to happen. So, I didn't have time to entertain a social life. It wasn't until two weeks after my surgery I had begun to reach out to people, and Sarah. I needed Sarah for perspective. Little did I know, I would be getting a lot more than just her perspective. From kindergarten through grade 12, only a handful of people knew of my CF diagnosis. Even fewer knew the degree to which it impacted my life.
During my early life, I wasn't a big fan of sharing personal aspects of my daily life, including my health. Whenever I needed a 2-3 week course of antibiotics I would lie to my peers and tell them I was on some sort of 'vacation' visiting family outside the province.
Moving to adult CF care
Moving to adult CF care was a culture shock. I catered less to my feelings and more to my health. No longer were doctors and nurses looking to seek permission from a legal guardian, because I was the only adult they needed permission from. The most daunting part about the transition to adult care was all the new people on my healthcare team.
For 17 years I had the same doctors, technicians, and nurses. This made me feel very uncomfortable. I knew my adult care team had the best intentions, but ultimately they were complete strangers and it is almost impossible to fully trust a stranger.
When I first entered the adult CF program, talks about having a double lung transplant had picked up steam. I would quickly put an end to these conversations because they caused me lots of anxiety. I also had a strong false sense of invincibility. At the time, we had the same nurse practitioner, who had given me your contact information. Unfortunately, the way life had played out, I wouldn't act on this until after my first transplant. Even still, it wasn't until after your second transplant we would become very close.
A bit of ignorance mixed with arrogance as a young adult made me think I was invincible to a certain extent. I shut down a lot of conversations revolving around double lung transplants. They caused me lots of anxiety, but also because of the fact that I fooled myself into believing I would never ever need a transplant. The total time between signing the papers to being the transplant process, and receiving the actual transplant was about a month and 15 days. Everything happened very fast.
The number one reason why I appreciate our relationship the most is because you can understand almost everything I go through. You have experienced it all before me. Every time I receive news that is either good or bad, my first thought is "I have to tell Sarah".
Thank you for being such an important piece that makes me whole. My CYSTER, best friend, my hero. I love yah Sarah-Lynn!
Tell us about your CF friendships in the comments below, and what they mean to you!
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