Living with cystic fibrosis has been a battle this year, but I survived
Navigating adulthood with CF brings many physical and mental challenges
It has been a year.
From an underwhelming season of “Vanderpump Rules” to a historic rap battle, the world has navigated a roller coaster of emotions and events. The highs of me being a huge Kendrick Lamar fan were matched by the lows of simply opening a news website or newspaper (whatever you prefer) and reading about multiple upheavals worldwide and the devastation they’ve caused.
I’m glad to say goodbye to 2024. Sure, I did some fun personal things, such as traveling the world with my wife and spending more time with my family. I also finally started going to therapy to address the medical trauma I’ve been dealing with my whole life and the mental obstacles I’ve created.
But I’ve spent more time in hospitals this year for my health issues as an adult with cystic fibrosis (CF) than I have since I was a toddler. These hospitalizations have nearly broken me, not just physically, but psychologically as well. There’s only so much a person can take.
Battling CF from childhood to adulthood
However, I’m still here, refusing to give an inch to any medical issues that arise. I’m here, not just for my wife, my parents, our dogs, and my other family members, but also because of my natural instinct to rebel against anything or anyone who tells me no.
My parents have been calling out my stubbornness my whole life — sometimes humorously and sometimes with frustration, in hopes that maybe I’ll listen and do what I’m told instead of fighting against everything.
The stubbornness developed, as you may have guessed, because it was necessary to fight for my life. I had to fight as a baby just to make it through my early months, and I’ve had to fight for the full life I’ve lived since then.
At 32 years old, I’m tired of fighting. I’m tired of managing CF-related diabetes every day. I’m tired of grappling with numerous lung infections each year. I’m tired of taking oral and intravenous antibiotics to fight off these infections. Getting older with CF hasn’t been easy. No one told me it would be.
But seeing other people with CF taking CFTR modulators and living seemingly unburdened by the everyday struggles of this disease is bittersweet. I’m happy for them, but I’m jealous, too.
The trauma of living with a terminal illness isn’t talked about enough — largely because most children born with terminal illnesses don’t make it into adulthood. I’ve noted in the past that CF has shifted from affecting mostly children to now affecting mostly adults, so it’s time to start discussing the changes within our community.
For the last few months, I’ve been dealing with a lingering staph infection in my lungs that won’t go away. A week ago, I started taking ciprofloxacin, which I’ve taken off and on for 20 years without issue. After taking the first dose in the morning last week, I vomited my breakfast and battled nausea the rest of the day. The next morning, I took it again and the same thing happened.
Mentally, I just cratered. I couldn’t understand why, after 20 years, I was experiencing side effects I’d never experienced before. What followed was a mental struggle that lasted into the afternoon. Was it just the cipro? Was something else going on? Did I have a stomach virus?
After talking with my doctor, we agreed that I shouldn’t take it again. My body is changing and the way I react to medicines has changed, too.
As long as some cataclysmic, life-changing event doesn’t happen in the next few weeks, that was the final mental battle CF put me through in 2024. I’m ready to leave this year behind.
I look forward to whatever 2025 may bring and refuse to give in to any more health obstacles. I’ll tell you about them then.
I’ll leave you with a quote from one of my favorite songs, “December,” by Teenage Fanclub: “I’ll take this chance/ To tell my friends/ What I’m thinking of/ On second thought/ I’ll think some more/ And tell you later on.”
Let’s meet again next year.
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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