I used to hate my birthday, but I’ve learned to appreciate it
Getting older can be troubling when CF affects your life expectancy
Growing up, I hated my birthday. It brought a wave of attention from everyone I knew and, more importantly, made me think about my mortality.
People with cystic fibrosis (CF) are all too aware of death and the likelihood of dying young. Patients are reminded of it when fellow CFers pass away at a young age or when their own body struggles to adapt to getting older, various parts failing along the way.
These days, however, I appreciate my birthday much more because I know that getting older means defeating the expectations that were once placed on me. This motivates me every year to get even older, to not rest on my laurels but instead envision a strong future for myself.
Defying the odds
When I was an infant, a medical professional told my parents that I’d be lucky to make it to 5 years old. I can’t even imagine how crushing that was for them.
Eventually, I turned 5. Eventually, I made it to high school.
As a teenager, I constantly dealt with questions about my mortality — those questioners unaware of how invasive their queries were — so I shared the burden more with my parents.
Back then, the average life expectancy for someone with CF born between 1993 and 1997 was 31 years old. I was born on Oct. 3, 1992, which means I just turned 31. I beat the questions about whether I’d make it. To quote the rapper Drake, “I’m still here, dawg.”
I want to keep defying the odds and make it to 70 years old. While roughly 90% of CF patients have access to CFTR modulators such as Trikafta (elexacaftor/tezacaftor/ivacaftor), I’m part of the 10% who don’t. After all, my nonsense genes inspired the name of this column! I want to see a future where we have treatments that target nonsense mutations, too.
Though I’ve traveled from my home in New Jersey to the Johns Hopkins CF offices in Baltimore in hopes that I’d match with a CFTR modulator, I may no longer have to travel far and wide. My CF pulmonologist told me that they’ll be administering a study for a new experimental therapy that aims to benefit those with rare nonsense genes. I look forward to participating in this study and taking what could be life-changing medicine.
My mindset and reality these days are way different than they were 10 years ago. I didn’t think I was deserving of a love that would change my life and motivate me to be better. Now, not only do I have a wife, but I have two dogs who need me to be around forever. I want to live much longer to enjoy these blessings. The future of CF is in great hands, too, filled with doctors, researchers, and families willing to do anything within their power and capabilities to help out this community.
Birthdays used to be the worst days, but now I sip Diet Coke with my birthday cake.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.