My Cystic Fibrosis Journey: 1973-1975

CF diagnosis in hand, the next few years were a whirlwind of learning for my parents.

When it became time to consider schooling, my parents decided to start me on time. The Catholic school district admitted students for kindergarten based on the calendar year – January to December, so my late November birthday landed me in school at the age of 4. My parents reasoned that there might be a point in life when I needed to take time off from school due to my CF, so there wouldn’t be too much of an age difference should I have to repeat a year.

I don’t remember much of my life before then. I vaguely remember my younger brother as a baby. I have snapshot recollections of bad stomach problems. Like many CF patients, I vacillated between diarrhea and constipation – CF patients are vulnerable to intestinal obstructions as well as loose stools. I remember the treatment for constipation – Mineral Oil. It was tasteless, but had the most vile texture to it. Then again, it was better than the alternative – a lot of tummy pain.

I also remember having to take the early versions of supplemental Digestive Enzymes – a green capsule with little beads in them called Cotazym.

 

The original Digestive Enzymes.

The original Digestive Enzymes.

I wasn’t old enough to swallow them whole, so my mother had to experiment with ways to get me to take them. She tried all of the tricks – opening the capsules and sprinkling the little beads into applesauce, hiding them in mashed potatoes, bribing me to take them, etc. We finally reached an agreeable option – she’d open the capsule into a medicine cup, mix it with a little sugar, and – I don’t know why this worked – she dissolved the green capsule in a little bit of water to color the mixture.

This solution became routine for me to take my concoction right before every meal or snack. Once I began school, because there was no school nurse and the administration didn’t want to be responsible for giving me my medication, my mom had to drive up to school every day at lunch time to give me my enzymes.

This was the first time I realized that I was different from all of the other kids.

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