Since Cystic Fibrosis is genetic I have obviously had CF all my life, but I was not diagnosed until I was 14 years old. It is a long story as to how I found out about my CF, but this will be a semi-quick version.
When I was born I seemed perfectly healthy and my parents had no reason to be concerned. A few weeks after I came home from the hospital a nurse called my mom to tell her that it was protocol at their hospital to screen all newborns for CF which was highly unusual in the 80s. She then told my mother that my tests results were "unusual". They could not confirm or deny CF and wanted me to get tested again. I retested at a different hospital and my parents were assured that I did not have CF. My parents were clearly relieved!
As the years went by, I still seemed healthy. I was very thin, but my older brother (no CF) was my same size. Everyone thought we were twins so my small size didn't seem concerning and it was assumed petite genes ran in the family
When I started elementary school I started to show classic signs of CF. I started getting night coughs that would go on and on all night long. In fact, I would cough so much that I would keep my entire family awake at night. I started going in the basement when my night cough would start and I would watch tv because I couldn't sleep anyway. I had a friend in elementary school ask me why I always had bags under my eyes so clearly my cough was severely interrupting my sleep. The doctors gave my parents every prescription cough syrup imaginable, but nothing worked. Looking back I am glad they didn't work because my body NEEDED to cough.
It was around this time that we started to investigate. I saw allergists, ENTs, asthma specialists. The list went on and on. Nobody knew what was wrong with me. A lot of doctors had theories, but none of the treatments ever made a difference. The worst Dr was one that said my epiglottis was too long and I was choking on it. A licensed Dr told my parents this and said if I slept elevated it would fix my mucusy chronic cough. Needless to say, he was wrong.
At this time I started getting bad sinus infections which I think was a blessing in disguise. The doctors treated my sinus infections with many meds they use for CF such as Cipro. When my sinus infections cleared (and the meds controlled the bacteria in my lungs) I felt so much better and the cough disappeared. The Drs all thought that my cough was due to sinus issues. Problem solved or so we thought.
When I was in 7th grade I started riding my bike a mile to get to school. I could ride my bike easily to school, but the WHOLE first period, I would cough NON STOP!!! I don't think I learned anything in that class because I was coughing out a lung everyday. It was humiliating, but also baffling! The class after P.E., the same problem occurred. I could not stop coughing. We would run a mile and when we were finished many students were panting, but I was the only one coughing uncontrollably. I never really understood why I would cough so much.
When I was 14 I saw a new Dr. He looked at my charts and was very concerned. I hadn't gained weight in 2 years! I was 14 and the same size and weight as when I was 12. This pediatrician had a patient that had CF in the past and decided that despite my "negative" as a baby that I needed to be retested. I had both a sweat test and a blood test. Finally after 14 years we found out my cough was due to CF and that I have the most common type Double Delta F508.
I was given enzymes and had a huge growth spurt and my digestive issues improved greatly. I started the Flutter and my nonstop cough decreased and I was able to sleep at night again. The diagnosis was a relief and terrifying at the same time. The first 6 months after diagnosis, I would do my flutter in the bathroom in pitch dark because seeing mucus grossed me out so much that I couldn't stand to see it.
Looking back I had so many classic CF symptoms that if I didn't have the incorrect screening as a baby I may have had a diagnosis before so much damage occured. However, I am thankful I was diagnosed when I was because my quality of life improved 10 fold after being diagnosed.
