Thursday, February 26, 2009

My CF Statistics

I've noticed a new trend with cystics posting their "CF Stats" on their blogs. 1) I hate to be left out of a trend, 2) it looks like fun, 3) they're great to read, and 4) did I mention I hate being left out of trends? ;) Anyway, here are mine:
  • My name is Piper
  • I turned 27 in November
  • I was diagnosed at 6 weeks with borderline failure to thrive and bacterial pneumonia that had spread to menengitis. Yikes.
  • Like most CFers, I got my enzymes in applesauce growing up. And, like all of them, I won't touch the stuff now. I wonder if the person who came up with that brilliant idea knew how much he was hurting the applesauce industry long term?
  • I have done CPT as long as I can remember. I used to have an ironing board like table that tilted down, and I could climb on it with my head pointed toward the floor while my parents beat me up. The only way I got break is if I promised to run laps around out yard.
  • I never went to CF camp and I never had a make-a-wish. I remember being asked if I wanted to go to CF camp (before they closed), but I said no. I went to "regular" camp instead.
  • I had one picc growing up until I hit 15. After that I was hospitalized at least once a year.
  • No sinus surgeries. Take that, CF.
  • I rode horses for years competitively as a showjumper. I owned several horses in middle school through high school. My doctor once told me cepacia was more common in rural areas to try and get me to stop. He also made me wear a mask in the indoor arena. I refused to stop and rarely wore the mask, but I was super healthy.
  • I had my appendix out in 2008. Because of my CF they weren't sure what was going on and made me wait for three days in the hospital on IVs before they gave me surgey. The night I had it uptown there was another CFer who had her appendix out downtown, and our surgeons communicated on how to do it b/c they were both freaked out.
  • I was told I should think about transplant in January 2008 and I was done with the evaluation 8 months later. I'm told this is fast.
  • I got my port when I was 18. The radiology guy who placed it wanted to put it in my chest, but I was REALLY not down with that for some reason. I wanted an arm port. But the guy told me right before giving me the happy drugs (I was awake the whole time) that if he couldn't make it work in the arm he would put it in the chest, so no promises. 9 years later I still have my fully functioning arm port and I love it!
  • I have one DF508 mutation (normal) and one complete deletion of the CFTR gene (definitely not normal). This means I inherited no CFTR at all from one of my parents. The official mutation name is "CFTRdele1-24" but this isn't tested for even on the full panel. Only the deletion panel revealed my second mutation, so for years we had no clue but knew my sweat test was well over 100.
  • 27 and still no CFRD (knock on wood). Again, take that, CF!
  • I refused O2 even for night until my doctor was literally not going to take no for an answer. For me, O2 was a BIG hurdle.
  • The sickest I have ever been in my life was in Australia for New Years 2007. I can't even think about that trip without wanting to cry. It was bad, and it was my own fault b/c I was too scared to go to the doctor before we left for fear she would make me cancel. She would have, and I should have, but I didn't. I went, but couldn't really enjoy it AND wound up making my family miserable. It's still one of my deepest regrets. Ever.
  • I'm the only cystic in my family. My older sister is a carrier, but CF free.
  • I was born next door to a little girl two months older than me. When I was 6 weeks old I was diagnosed and her parents felt terrible for my parents. A year and a half later, my parents talked to her parents about getting tested for CF b/c she had similar symptoms. She was tested, and had CF, and the two of us (and our weird story) became part of the reason that Colorado was the first state to institute newborn screening. We're still friends, and her younger sister also has CF.
  • When I was diagnosed the doctor told my parents to "take her home and love her for as long as you can, because she won't be around long." I'm still here. I have no clue if that doctor still is ;)
  • I was a poster child and keynote speaker for the CF foundation for about 20 years. I appeared at events in CO, CA, and GA. Mainly I covered an event called the American Airlines Celebrity Ski, which is held each year in March and has raised several million dollars for CF research. I am grateful everyday for the chance to have been a part of that.
  • My parents won the local chapter "Breath of Life" award for Colorado in 2007. I am so proud of them.
  • Between my parents, my unbelievable big sister, and my friends, I have what my doctor has called "the best support she's ever seen." I am so lucky.
That's all I've got. If you read this and have CF or have a loved one with CF (haha, as if anyone reading this isn't connected to CF!), consider yourself "tagged." Let's hear those stories, people!


  1. *Sharpens blog pensil* How fun :D Xx

  2. Scratch that, i meant pencil. I knew something wasn't right there.
    Your stats were good to read it has to be said!

  3. Thanks for sharing that Piper. Your parents are awesome!!!! I really don't know what CFers do without that support. I've always been so blessed in that area!

    I'm curious... when did you know you wanted to become a lawyer? What prompted you to go to law school? :)

  4. This list proves just how much we have in common!!!

    Guess I better get cracking on mine ;)

  5. I never had a make a wish either. I didn't think we could do them. I learned we could 3 days after I turned 18..... 3 days to late. Oh well, I have been SO blessed with so many fabulous opportunities but it could of been my in with Madge. :)

    I had planned a HUGE Ireland trip on St pattys day 2007. 30 of my family members were going and one of my best friends. I got super sick before and they day we were to leave they all went to the airport and I went to the joint. :(

  6. Thanks for sharing...very interesting!

  7. That was fun to read!! I guess I didn't know you were from CO--my hubby is too! He lived in Pueblo and would go up to Denver for clinic.