The Joys of having CF

The Joys of having CF

Friday, March 16, 2012

New News

So a few days ago we got my transcripts from when I was in the hospital that gave an overview of everything, like what meds I was on, why I was admitted etc...and as we were reading it we came to a part that said "Paige's mutations" and it said "Delta F508 & G542X." That confused us all, because for as long as we can remember we had thought I was a Double Delta F508. So we went back in my baby book and got out the sheet from when I got tested for my mutations to see what they were, and sure enough when I was tested over 14 years ago, my genes are Delta F508 & G542X. So this could sort of change things, and sort of can't. The ups: I still have the Delta F508, so when a drug comes out targeting that gene I can probably get it :), another up is that the gene G542X, i don't believe is as "harsh" as the Delta F508, which sounds bad, but it is a good thing. It changes things a little, but i'm not worried, as long as I do my treatments & EXCERSISE this summer, I know my lung function will stay high. The only way my lung function will decrease is NOT because "CF is progressing" it will be because I become a slacker, which I WILL NOT become. I am going to live a VERY long, HAPPY, HEALTHY life, and get married and have kids, and become a grandmother with gray hair. We only get one life and i'm gonna LIVE IT!!!

It's also 2 months till my local CF walk-a-thon, so if you're interested in helping me meet my goal this year, and helping create more tomorrows here's my personal CF donation page: , have a great weekend :) ~God Bless

Wednesday, March 14, 2012

MIA & CF Walk~A~Thon

So as you've all probably seen i've been a little mia. Well we went to visit our friends in Arizona for a few days. We had a BLAST I've never had so much fun. My perceptions of Arizona were waaaay different. I can't wait to go back. I also got to meet fellow CFer Ronnie Sharpe from you should definetly visit his website. Here's a link to visit my pictures that I posted to my Facebook account Enjoy :)

ALSO: the following i'm going to keep posting for CF awarness and for Walk-A-Thon info & Donations:

As, you probably remember from previous posts from when I was in the hospital, when I got my PICC line put in I was going to be the PICC line model, for teaching purposes to help other kids when they get one to teach them about it. It was through Child Family Life. They had a photographer, Jim, come in and he was great. He took TONS of photos, and he was nice enough to make me my own copy with some of the pictures. Well, I decided to raise awarness for Cystic Fibrosis, to make a video of the pictures. I promise there is only 2 pictures with blood. Nothing to bad. So here is the link to watch it: I hope you enjoy it. Feel free to share it with anybody to help create awarness for Cystic Fibrosis, and since the Cystic Fibrosis walk is coming up, you can also feel free to visit my CF walk a thon page: Any donations are appreciated to help raise money to cure Cystic Fibrosis. CFers have an unusual bond together, CF makes us stronger, and no matter what obstacles we are faced with, in the end we just learn to....STAND! ~God Bless