Thursday, February 26, 2009

CF story!!!

Since I have been tagged I will join in the fun!

I am so using Piper as a guide since she and I have a lot of the same things LOL!

Here is my CF stats list!!!! 

I am 28 years old and will be 29 in October! 

I was diagnosed at 5 years old.  My mom took me to all the good hospitals in Philly and all they told her was I was allergic to everything!  So she stripped my room down to the bare bones and cleaned every day.  Yet I got worse.  I could also eat more than my 250lb dad and I was 2 years old.  My mom KNEW there was something wrong.  FINALLY our family DR who works from his house diagnosed me.  Told my mom I had CF and to get me sweat tested.  162 was my number ;)  I think it is safe to say he was right! 

Funny thing that I think relates to the whole CF thing.  My dad is one of nine and not a single one of them was under 9 lbs when born.  Same with my most of mu cousins and my brother.  I was 6lbs 9oz when I was born.  I think there is a correlation!  

My mutations are DDF508 

I participated in the Penn gene therapy study back in 2000 (I think) but it got canned when some guy from another study died and his family sued (HELLO we signed papers saying that could happen!!!)  WTF!  Fucking sue-happy assholes!  

Never had a sinus surgery and have yet to get CFRD…like Piper said “Take that CF!” 

I rode horses when I was younger doing lead line then I started again when I was 14 and rode till I was 18.  I did show jumping on Hunters and LOVED it.  I still miss it terribly and I have dreams at least 3 times a month about riding and the farm (my dad and aunt own a farm for riding).  I stopped when I went to school and just never found the time to get back into it.  Now I am not in shape enough, nor do I have the energy/health to do it…baby steps though so maybe one day… 

I never went to CF camp and never knew about them until I joined the CF forums online!  I also never had a Make a Wish and never knew “we” could get them until I joined the forums.  My mom always thought it was for the dying kids with Cancer etc. 

I had a beating board too.  My Aunt made it for me and I would lay on it upside down with my arm over my head and my mom would beat me.  Then after 3 minutes she would do the “shake” thing and then I would sit up and cough.  That all lasted until I was big enough to say go away LOL!  Then I didn’t do CPT again until I got my vest in 1999.  We used to use my board when I would have sleep-over’s as a couch and we would all sit on it and try to not fall into each other haha!!!! 

I always thought I was the only one in my family but my dad told me a few weeks ago that he had an older cousin with it.  I still have to call my Grandmom and get details.  I have no idea if my brother has ever been tested but my nephew is healthy and I am hoping the next one is too. 

I wasn’t hospitalized for a tune up until I was 18.  I was death walking and it felt so good to get treated.  After that I stayed out for 2 years, then 3 years after that then 3 more years then 3 times in 6 months…now I am hoping to make it a year at a time.  Guess they call that progression. 

My FEV1 has never been over 100% (at least according to my chart which I trust since it is copied from the one I saw my whole life at every dam appointment). 

My weight was always an issue for me up until this past year.  I am finally at a healthy weight and my lungs took a shit…figure that one out! 

My FEV1 hovers around 40% right now and I am hoping with the Inhaled Cipro study I am starting next week I might get it to 45-50%. 

I love my DR like my own father and God help me if he retires or dies before I do.  I will be lost and devastated!!!!  I would also love to move around and live in different areas but that would mean leaving him and I won’t do it.  Call me stubborn but he has been my DR since I was 5.  How is THAT for commitment! 

I am obsessed with going to school and kinda of secretly (well I guess not now) am looking forward to the day I have to go on SSDI so I can go back to school full time and hopefully have the government FINALLY pay for it! 

That’s all I can think of for now!!!!


  1. Yay! You and I are "cysters" in every sense of the's scary how much we share in common (even beyond the CF -- the riding thing is just weird!). Loved the post, loved learning more about you!

  2. Thats funny I just told Piper that I never knew we could do make a wish either I learned that we could 3 days after I turned 18. 3 days to late.

    I have loved reading everyones stories! Cf is such a fascinating disease how it is so different with each person.

  3. Thanks for sharing! I can't believe you didn't know about Make a Wish! The staff at Make a Wish would hover over us CFers here until we decided to make/take one!

    And I completely understand about never wanting to leave your doctor. I hated to leave mine, but didn't have a choice due to transplant. But he was like part of our family..we was greatly loved!

  4. Nice to know more about you. I'm confused why you use o2 if your pfts are around 40. Hmm. What are you sats?

    Cowtown :)

  5. I use O2 at night when I sleep :)

  6. I never knew about make-a-wish either and it is hard to say now, but I think even if I did, at the ages I would have been eligiable I would not have wanted to do it - because I would have related it with sick, dying kids. Looking back now I think I missed out on a lot of opportunities like that because of my own stubborness.

  7. Wow I've learnt loads about everyone now. I also had a beating board too, although it was a proper on from the hospital that they gave us. Basically like a massage board that was higher at one end and without the hole for your face! Xx