I went to public school up until the eighth grade when I switched to a private high school. On the very first day of my new school, I immediately knew that there was no way I would be able to balance everything that I wanted to do there along with my health. So, I began skipping more and more treatments to make time for school, friends and sports. Two weeks into my freshman year, I was hospitalized. I can easily say it was the worst Labor Day weekend ever.
The worst part of this hospitalization, however, was the timing. The first month or so of school is when everybody starts to really bond and form their friend groups. I was making friends before my hospitalization, but when I came back two weeks later almost none of those people still talked to me. I had to make all new friends, which I am almost thankful for because I now have the best friends ever and I know they will never leave my side.
After I was hospitalized, I knew that something had to change. Instead of playing many different sports as I had done my whole life, I decided that basketball was the one I really wanted to focus on. But even though I cut back, the fact that I had to wake up much earlier than my other classmates because of my CF only made it harder to attend practice every day, do all my treatments and finish my homework without being completely exhausted. Then, in November of my freshman year, I got a port and could no longer play basketball because it had to stay accessed for my daily antibiotics.
This is when things really started to suck. I couldn't do anything I wanted to anymore. I couldn't play sports; I had two IVs every night so I couldn't really stay out with my friends, and if I was going to stay home, there was no way I was going to do my treatments. I kept doing my IVs and oral medications, but nebulizers and chest physical therapy were totally out of the question.
My parents bugged me constantly about doing treatments, and the more they bugged me, the less likely I was to do a treatment. There were just so many things I would rather be doing. This behavior ultimately resulted in me getting sicker and sicker with more appointments and more hospitalizations, giving me less time to spend at school or doing the activities I enjoyed. School was getting harder and harder, and I have no idea how I kept up my good grades because I missed so much school. I never felt good and was always in a bad mood.
This is around the time when my care team started to step in more than they already had. One of the things that my care team talks about quite often is the quality of life you have. I have a great relationship with my team and feel comfortable talking with them about how I feel, which -- I think -- is one of the most important things for a person with CF, no matter how young you are. After talking through the challenges I was facing, my CF doctor and I came up with a treatment plan that would work for me. In the end, we were able to negotiate a deal so that I was doing more treatments than I had been before, but I wasn't just sitting at home hooked up to machines.
I learned that it's important not to focus so much on your health and treatments that it feels like you aren't even living your life anymore. However, it's also important to stay healthy so you can live your life the way you want to live it.
I am now a junior in high school and while I'm definitely not the best about doing my treatments, I do them more frequently than I did when I started high school. I am so grateful to have a care team that is willing to work with me and figure out what works best for me.