In this CF life, I won’t give up trying

When I was in my late teens and early 20s, before I met my wife, I would go anywhere and do anything at a moment’s notice. Staying out until 3 a.m. at a random bar on Manhattan’s Lower East Side? No problem. Watching a friend’s band play in a basement in Brooklyn? I was down!

Those days were filled with junk food and coffee, and a lack of sleep. But who cares at that time of your life?

Thank God I’m not that person anymore. I’m grateful my friends and I have grown up and realized that it’s not a healthy way to live.

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However, as I’ve gotten older and settled down, my health isn’t what it used to be. As a person with cystic fibrosis (CF) who doesn’t have access to treatment with CFTR modulators because of rare gene mutations, getting sick can mean a long-term setback.

When I was younger, a fever or a cold would last two or three days. Today, they last much longer. In fact, I’m currently recovering from pneumonia, which will take about a month. This is the third consecutive year I’ve had it. This life is certainly not what I’d envisioned getting older would be like.

The guilt of missing events

Last year, I missed watching my cousin run the New York City Marathon to support the Boomer Esiason Foundation. I still carry the weight of that guilt.

This year, I’ll be unable to attend my cousin’s wedding because my doctor understandably won’t clear me to fly while I’m recovering from pneumonia. This situation is just as personal as last year’s was, because my cousin was a groomsman in my wedding two years ago.

I’ve always known that bumps in the road are par for the course with CF. The possibility of missing the milestones of friends and family is constant.

Plus, I don’t like showing my emotions to others. As an only child, I’ve always kept my fears, anxieties, and paranoia to myself. This column is a space for me to share things that are difficult for me to speak about.

Anxiety about getting older

In the next few years, I hope to experience fatherhood. Seeing friends and family become parents has been inspiring and beautiful. But my greatest fear is constantly being sick and missing out on my future child’s milestones, whether it’s their first steps, youth basketball games, or school graduation.

I do my best to stay as healthy as possible. However, healthier people forget that no matter how hard I try to do so, my body is slowly killing me.

I understand this column is contrary to my last one, which was about being optimistic and doing what’s necessary to grow older with CF. But since I’ve returned home from the hospital with yet another PICC line (a peripherally inserted central catheter), reality has set in.

I can only hope that my body will swing back, even just a little bit. I want to be old, wise, and careful. I want to watch my future child do things that I only dreamed about, like going to college. I want to watch other family members and friends get married and have kids. I want to be there for my wife and grow old with her. Sometimes I’m really scared I won’t be here.

But I won’t give up trying — I promise.

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.