My name is Vivian, I am a senior in high school, and I was diagnosed with cystic fibrosis when I was only a few days old. In my early life, I had fewer treatment options than I have today, so it was more difficult for me to live my life like a child without a chronic illness.
Because I had so much trouble digesting food and gaining weight, I had a gastrostomy tube inserted into my stomach to help me get extra calories when I was 2 years old. I was put under anesthesia, and a small incision was made in my stomach to insert the G-tube. For much of my early life, I received the majority of my food from the fluids pushed through this tube into my stomach and I had it until I was 15 years old.
The G-tube was a sign that I was different from my peers for 13 years of my life. Every time I went to the pool or wore a leotard for dance, you could see a bump from the tube protruding out of my clothes. This was a difficult experience for me when I was little.
Since kids are so curious, they would often point out the bump. These instances made me feel like my illness could be seen by all.
Despite the fact that I was getting hundreds of extra calories through my G-tube — and taking up to 20 enzymes per day — I still wasn’t gaining as much weight as my doctors wanted because of my CF. Thankfully, in 2019, the FDA approved an amazing drug called Trikafta. It was designed to specifically target the genetic mutation that causes my cystic fibrosis. Within days of taking it, I started to feel better! I could breathe deeper, run farther, and most importantly, I started gaining weight.
Soon after starting Trikafta, I stopped using my G-tube and was able to begin gaining weight without it. We kept it in for a couple more years, just in case I got sick and needed the extra calories. But that never happened.
Finally, in 2022, my G-tube was removed for good. I had a small procedure done to repair the hole in my stomach, which left a barely visible scar. Not having that visible (and physical) reminder has been so good for my mental health. As I approach the end of my senior year, I now spend my time focusing on what my future holds rather than constantly focusing on the fact that I have cystic fibrosis.
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