Imagine living your whole life knowing you have an early expiration date. Then you wake up one morning, and that’s no longer the case.
Sounds great, right? Of course it is, but it’s so much more complicated than that. I never would have understood before living through it. Trikafta (elexacaftor/ivacaftor/tezacaftor) has had a profound impact on my life in so many ways: positive, negative, and everything in between.
Hospitals have been a sort of second home — a strange escape, if you will. Nurses were my friends, doctors were my parents. Not all aspects of hospital life are rainbows and sunshine. I spent 29 years swapping bad memories for good ones.
Memories of missing concerts and holidays were replaced with watching midnight movies while my nurse charted, and sneaking off on deserted rooftop adventures to watch fireworks. Needle sticks and operations were warmed by coffee runs and free passes to play video games all day. Now those moments and people have almost diminished for the time being, and possibly forever.
For most of my life, I was focused on the present. I knew I had a shorter time than most to experience what life has to offer. So, I lived. I didn’t think about the future. My future planning consisted of a rough vision of my career path, which has ebbed and flowed with my health anyway. My point is: When you are terminally ill, you have to go with the flow and know that anything could change in an instant.
When I got my first job with benefits, I was offered the opportunity to put money toward a retirement fund. My health was, unfortunately, on a pretty steep downhill path. I awkwardly asked, “What happens if I won’t live long enough to retire?” I have worked this job for four years, putting no money into a retirement fund, and still have no idea if I should start one.
Out of all the challenges the existential crisis of going from dying to living has brought, the overall emptiness in my vision of the future is the worst. I grew up knowing I was terminally ill. There was an end. No one can see the future, but I had accepted that I most likely knew how I was going to die. In fact, I had just come to terms with applying for disability after two or more years of struggling with the concept.
Gene therapy and Trikafta are so new. No one knows how they will affect our health in the long term. Will I get as sick as I was before Trikafta, just at a slower rate? Will my health stay stagnant at this not-too-sick but unhealthy state? I don’t know, and that’s hard.
In a way, it is like bidding farewell to a friend that has played a role in molding and shaping you into the human you are today. I am immeasurably grateful for my stabilized health that allows me to continue doing the work I love, spending more quality time with my family, and embarking on new adventures that I previously was physically unable to do. I can laugh without reservation, breathe deeply, and live more freely. All of these positive changes outweigh the negatives, but it would be wrong to deny the challenges that come with such a drastic change.
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.
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