My 25-Year Anniversary of CF Diagnosis
The 25th anniversary of my diagnosis. It crept up on me without my noticing. I was on a meeting a week or so ago discussing when we started showing symptoms and I did the math. It's been twenty-five years already. The realization brought on a good deal of mixed emotions. There have been so many struggles. Yet, there have also been so many triumphs.
I was ten when my parents started noticing I was sick a lot. There was a nagging cough that wouldn’t go away. I’d always been on the small side but that didn’t alarm them much. It was really the cough that sent them headfirst into the two-year journey that led them to my cystic fibrosis (CF) diagnosis in February of 1998. I was twelve at that point. I spent Valentine's Day in the hospital that year.
The bad news buffet.
The weeks that followed my diagnosis were filled with strange faces and new routines. I suddenly had a nutritionist looking to add calories to my diet. There were pulmonologists focused on raising my alarmingly low pulmonary function test (PFT) results. I had social workers trying to help us all managing this new information. I had an endocrinologist telling me of my risk of diabetes. It was all so much to digest at once. All while trying to manage the already chaotic world of a pre-teen.
I remember not feeling overwhelmingly scared at first but as news crept up of a lifetime of treatments, medicines, doctors, and a possible inability to carry a child- the diagnosis became crushing. I remember the utter devastation, shortly after the diagnosis, when I decided to look online for more information. While it wasn’t quite as easy to access information twenty-five years ago the effect was quite the same. Horror.
I read of a life expectancy of nineteen. That left me only seven years. I shut down for a while after that and barely bothered to even do my treatments. I became more concerned with enjoying my life if it was going to be cut short.
A turn of events
When I was sixteen, I was still stuck somewhat in that mentality. Then I met a boy. Within weeks of dating, I told him about my CF. He’d been the first person I ever told. I stopped listening to the number hanging over my head and started dreaming of a future. At eighteen, we were engaged. Suddenly I had something I was determined to be around for. By the time we were married the life expectancy for someone with CF had gone up to thirty. At the time thirty seemed a lifetime away.
The years passed quickly. We went on to have two boys together and I pursued my dream of becoming an author. He joined the military and provided a life for us that gave me the ability to take care of my disease and be around to cherish all the moments with them. Soon though, thirty crept up on me, but by then the life expectancy had jumped again (to thirty-five). Still, celebrating my 30th birthday was bittersweet.
It’s just a number
Somewhere between thirty and thirty-five I was able to start on Trikafta. Instantly I began to gain weight, my PFT’s went up, and I got sick less frequently. Finally, I stopped counting my years as if they were a countdown. I was able to do more after beginning Trikafta and started really putting thought into what I wanted to do with my life.
Now, I sit here thinking back on how much has happened in those twenty-five years since I was diagnosed. I got to discover love. I raised two amazing boys- one of whom just got accepted to his first-choice college with a full scholarship. I have been published numerous times. I’ve met wonderful friends who have become family. Most recently, I learned how to really love myself despite my limitations. Everything I thought I wouldn’t have, I did. I’ve embraced my cystic fibrosis as a part of me, but not as something that can define my whole life.
Age is just a number and I’m so glad I didn’t let it decide my fate. Here’s to the next 25 years!
Have you had a flare on Trikafta?
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