Tuesday, January 25, 2011

Starting at the Beginning

In most cases, people who have Cystic Fibrosis are diagnosed at birth or within the first two years. I am the exception to the rule. I was not diagnosed until I was six years old. So, for the first six years of my life, I had stomach issue after stomach issue. I won't share all of the details with you, but I would eat all of the time. It would just go straight through me. I looked like a child who was malnourished with a protruding belly and thin, tiny appendages. My mom took me to three different pediatricians before they figured out what was wrong. So what threw them? I had virtually no lung issues. Why? They said that it was because of how active I was. I was always going... running, playing, jumping. While it made my lungs healthier, it extended the time it took to get a proper diagnosis. Finally, my doctor performed a sweat test on me, and determined that I had Cystic Fibrosis.

From that point, I quickly began accumulating different treatments to fill my day. It was hard, because my breathing treatments took at least twenty minutes each, and I had to do them twice a day. That is a lot of time for someone who is wanting to be outside playing with her neighborhood friends. There are many times that I remember crying when my parents made me come in to do a treatment in the middle of a game of hide-and-seek or kickball. I did it all anyways, and for the most part, I stayed relatively healthy. There were periodic hospital stays for pneumonia or bronchitis, and I dealt with it. My CF doctors believed in doing bronchoscopies (when they go in and flush out the lungs) regularly as a preventative measure, so I began having one done almost every year. Again, I dealt with it and kept going.

I really began resenting the whole thing when I reached high school because I had things that I found more rewarding and important. I was a cheerleader, and I wanted to spend my time doing that, working out, and learning how to tumble. But there were always breathing treatments to do. Through all of that, I still stayed healthy when compared to other people with CF at my age. It wasn't until my senior year that I started skipping treatments here and there, and my health started to decline a little. Once I got to college, it was even worse... but more on that later.

There is so much more that I could write on this part, but I don't want to go on forever. So that is it for now, and I will add to it as I go on. I have to admit that it is really nice to write all of this out, because there are so many things that I keep hidden. I do that because when I was in high school, I decided that while CF is a huge part of my life, it would not define who I was. Most of the people I knew in high school still probably have no idea that I have Cystic Fibrosis unless they are reading all of this now. I just kept it all to myself, so this is a pretty big deal.


  1. Kayla. Take care of yourself girly. We need you in this family forever! :) Thank you for being strong enough to post about this struggle. You are right, Cystic Fibrosis does not define who you are.