One of the most difficult things about having cystic fibrosis is the number of medications that we take daily. I take between 40 to 50 pills, do 4 nebulized aerosol treatments and administer 2 vest physiotherapies each day. For each patient, these numbers vary.
I’ve been carrying a pill bottle with me since I was a little boy. My mom often carried them in her purse when we went anywhere, but eventually, I had to take responsibility for them. It’s certainly not an easy subject to discuss when you’re a little kid if someone asked you why you took pills. Pills were for old people. Pills were for sick people. Pills were for “unusual” people. I never wanted to be any of those.
I’ve been asked what would happen if I didn’t take my pills. One time during the summer of my senior year of college, I didn’t take nearly enough pills at a cookout and developed distal intestinal obstruction syndrome or DIOS and was sick for days, missed a lot of school and had to go to the hospital to have them loosen my bowels. When I started the CFTR modulator Trikafta 5 years ago, I thought my digestion would improve greatly. I took less pills and all of a sudden developed issues with my stomach. After I went back to the old amount of pills, it finally improved after several months.
Cystic fibrosis is considered an invisible disease because it’s not obvious that we have any sort of disease when you look at us but carrying around a pill bottle and having someone see it for the very first time; that invisibility cloak is gone forever. It’s something many of us don’t want to reveal as a first, second or third impression of us.
If someone has come out to you about having a chronic disease, consider it an honor because it means they are comfortable with you, they trust you and they consider your friendship valuable to them. They also believe that you feel the same way about them.
Thanks for taking the time to read this and I hope this helps those of you who have friends and/or family members with chronic diseases.
Live your dreams and love your life.
Andy Lipman
#cfwarriorproject
#CFAwarenessMonth