Friday, May 23, 2008

My CF Story (Part 1)

I met CF mother on the baby boards yesterday, and she mentioned to me that it was inspiring to hear from an adult with CF who is doing well. That touched me so much and made me decide to share CF story for any CF parents who may read this. This is a relatively long story, so I will tell it in multiple parts. Here is Part 1:

I was born in November of 1976 in Portland, Maine. A few months after I was born, my grandmother was playing with me and nibbling on my toes, when she exclaimed, “Oh my! She is so salty!” This concerned my mom, who had heard babies with salty-tasting skin should be tested for CF, and mentioned this to my pediatrician at my next appointment. The doctor shrugged it off and said “there is no way she has CF” because I had no symptoms or family history of CF. However, my mom, wanting her fears relieved, insisted they perform a sweat test to confirm I did not have CF. Much to everyone’s shock, the sweat test results were positive.

Me as a Baby (Wasn't I Cute?)

My parents refused to believe that I had a fatal disease and took me to the Children’s Hospital in Boston for second opinion. Again, the doctors said, “there is no way she has CF” but the sweat test came back positive.

My parents were told that I would probably live about 16 years.

So began a lifetime of medication for me. I remember being very young and taking this gross liquid medication daily (it was an antibiotic) and fighting my parents tooth-and-nail over taking it. I also remember having to start every meal with a bowl of applesauce that my mom had emptied my digestive enzyme capsules into – I hated it when the little enzyme beads would be stuck in my teeth because they tasted awful.

However, I never exhibited any symptoms of CF for years. I remember my doctors sweat testing me again when I was older just to make sure I really did have CF. It wasn’t until I was 12 and got really sick that my doctors conceded that yes, I had CF.

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