Birthdays Through the Lense of Cystic Fibrosis
Last updated: February 2023
In light of my birthday in January, I’ve been thinking a lot about getting older. Living with cystic fibrosis (CF) has definitely affected my feelings about aging, and not always for the better. Over the years I’ve largely viewed my birthday as a milestone closer to the end. Not that I haven’t celebrated it, or that it filled me with dread, that’s just how it is. I suppose that’s what everyone’s birthdays are, really; I guess I just think about the mortality of it all, as I’m likely to have fewer of them than most other people.
Average CF life expectancy
I didn’t always know that cystic fibrosis was so severe that it could (and probably would) shorten my lifespan. I found this out during my freshman year of high school, when I was 15 years old. I had to write a report in my health class, which was allowed to be about any health-related topic we wanted. I chose the obvious: cystic fibrosis.
Considering my experience on the subject, it would be an easy A. During my in-class research, I came across a concerning piece of information: the average life expectancy of someone diagnosed with CF (at that time) was only 30 years. I was devastated! I had to leave class and go sit in the school office for the rest of the day until I could go home. Luckily, my health class was near the end of the day, so it was only about an hour.
After school, I rode the bus home to my parents. Back then, I was so angry with them for not telling me that my life would be shortened. I realize now that it would have been just as hard for them to tell me as it was for me to find out.
A hard parenting choice
My parents explained to me that it wasn’t an easy fact for them to deal with either. Not only is it just plain hard to think about (let alone talk about), but they also didn’t want me to feel limited in what I could do with my life. They wanted me to live as full of a life as possible without feeling like I couldn’t - or shouldn’t - do certain things.
Also, who knows what could happen in the field of medical science between now and then. For all they knew, CF could have been cured and I would have been able to lead a full, happy life. I’m still not sure if I think that they made the right choice, but I understand that it was a hard one. Maybe there are no “right” ways to tell your child that they should expect to die early.
CF and depression
Honestly, I think that pivotal moment was the start of my CF-related depression. Over the years, I’ve struggled with ideas like post-secondary education, marriage, children… pretty much anything pertaining to “adult” life.
“How could I justify using college grant funding for a career that I might be too sick to pursue? How could I claim to love someone, and then knowingly put them through the heartbreak of losing their wife? How can I justify having children if I’m too sick to care for them properly?”
All of these thoughts and feelings have run through my mind on repeat for the last 15 years.
CF and double lung transplants
Things changed a few years ago when I was told by my CF doctor that it was time to see the lung transplant team. At first I wasn’t sure how to feel about the idea of needing a double-lung transplant. I was scared, obviously; it’s a major procedure that can have all kinds of complications and risks. As I learned more about what receiving new lungs would mean for me, though, I began to hope. I started to think that maybe I could have a fulfilling, long life.
I knew the process would be long, hard, and it would test me in ways I could barely understand. The evaluation and waiting beforehand, and the recovery and maintenance afterwards would push me to limits I hadn’t yet reached, but I knew that I had to go through it and come out on the other side if I wanted that life I dreamed of. I chose to believe that it would be worth it; I chose hope over fear. I convinced myself that I had the grit/mettle/fortitude - whatever you want to call it - to do what needed to be done. I told myself that I wouldn’t take “no” for an answer, that excuses were inexcusable, and that NOTHING would stand between me and what I wanted.
During my evaluation, Trikafta was approved and prescribed to me, and it pushed my lung function up enough that I no longer met the criteria for needing a lung transplant, but I have kept that determined mindset through my CF journey since then. Rather than fear, I will keep choosing hope.
Have you participated in clinical or market research before?