Cystic fibrosis is something that is a part of me, but it does not -- and never will -- define me. I am not CF. CF is not me. But it is, however, there. I wake up during the night from coughing. I take an hour each day to do my vest and breathing treatments. I go to study visits, get blood drawn and have electrocardiograms.
This is my reality. I have CF.
A week before my 12th birthday, for example, the window to enroll in a certain clinical trial was closing. My doctor reached out to my family and asked if I wanted to be in the study. He wanted me to do it, but you had to be age 12 or older to enroll.
After some thought, I decided that I wanted to do the clinical trial. I wanted to know that I was helping other people with CF. I wanted to know that I could be making a difference. My family, friends and doctors encouraged it, as they wanted me to test a drug that could possibly help me and others. I felt a little nervous and scared -- afraid that there would be side effects or the drug would cause something bad to happen to me.
But on my 12th birthday, I found myself at the hospital giving blood and doing all of the other tests that were required to enroll in the study.
I did a pulmonary function test, and there were a bunch of blood draws (although there was only supposed to be one). They tried six times before it finally worked, and they got all the blood that was needed.
Next, I did a sweat test. I had done a sweat test before, but this time was different. I hadn't been allowed to eat and was worn out from the blood draws. I was stressed. Five of us were in a small room, and I was burning up.
I started to hyperventilate, and soon, I was having a full-blown panic attack.
After the panic attack, I finished the other medical tests and went home to wait for the results. We had no idea if I got into the clinical trial or not, and we also didn't know if I was going to be on the placebo or the actual drug. About a week later, we found out that I was accepted.
Being in the study wasn't as scary as I thought it would be. I actually enjoyed going to the study visits because they reminded me why I was doing it in the first place. Although it was hard not knowing if I was on the placebo or not, six months later I participated in the open-label extension study where I got to be on the actual drug.
I'm on the drug today, but soon the open-label extension will close. I'm going to miss being on this medicine. It was cool to be a part of something and to help other people like me.
That's the entire reason I did this study and why I didn't drop out. I did it simply so I could help push this drug through the process so other people could use it. I'm happy that I got to be a part of this clinical trial and will definitely consider doing more.
