Tuesday, January 31, 2012

Kalydeco APPROVED!!!

I can't even begin to describe the feeling I had when I woke up this morning, got online, and read about what I have been waiting for! Kalydeco was approved by the FDA! As I read this, I couldn't help but cry tears of joy. I soon ran as fast as I could to my mothers room to shout the amazing news. The entire morning was filled with texting friends and talking with people about how excitement there was now in the CF community. Only 4% of the CF community have the mutation that this drug targets, and thats one of mine! When I first heard about Vertex having drugs in clinical trials a couple years ago, I never dreamed the day would be here already. I had heard the rumors of how healthy this pill made them feel. How much they could actually do during the day now and feel almost NORMAL. I read about how they could RUN. I remember one night about a year ago after hearing about how a fellow cyster could run, I had this crazy dream. In my dream I was on a track running and running and running; running up the bleaches and around without being crazy out of breath or coughing. I remember waking up and thinking one day I will do that, I hope I get the chance to do that. Today gave me so much more hope than I have ever had before; which let me tell you was a lot before because I have always been a glass half full type of person about drug improvement.) I am going to start trying to run so when I get Kalydeco I won't stop! I long for the, which will be in a month or two, where I actually get these "lightening" pills. This will hopefully improve my lung function by at least 10% so I can live longer and have an amazing future. Studies have even shown that it will also help me maintain and even gain weight! If it does then hopefully within this next year my feeding tube will be outta here! I simply can not wait for what God has in store for my future!

Smile on my face all day long!

For those of you who dont know what Kalydeco is here are a couple links that give a brief explanation...

Friday, January 13, 2012

New Year and i cant wait!

I can not believe that it is already 2012. The years keep going by faster and faster; not okay! I must say that this year has started off pretty darn perfect though, and I can not wait for what God has in store for my life this year. My year started off with a little vacation in South Lake Tahoe with my family. It was so much fun! This last week was my first doctors appointment for the year a first visit back since I had been on i.v. antibiotics. When I did my pft's to determine whether I got my picc line taken out in December, my lung function was at 53%. I had been so hopeful for this visit because it had been one month off antibiotics and I still wasn't really coughing at all :) I stepped on the scale and waited for the number to go up. I hate reading my weight in kilograms and always snap at the nurse right away asking what my weight is in pounds. Very eagerly of course I asked the second the numbers stopped and she said "107!" Yay! Thats the most I have ever ever ever weighed on the Stanford scales! Good start to my appointment. Now to just to take the deepest breath in I can and to blow every little bit of air out of my lungs as fast as I can...54% baby! Not the best but I can't complain since it did at least go up one percent! Next visit in April my goal is 110 pounds and to blow a 60%

My goals are high now and that means I am kicking my butt into gear this year, and getting every little bit of air that I can. This week I finally got to start ballet up again! For those who don't know, dancing is my passion in life and I have danced since the age of three. These past four years I haven't been dancing because of school and what not. I believe not dancing, and not doing as much physical activity, has been one of the causes of why my numbers have dropped so much since high school. Ballet brings so much excitement and pure joyfulness back into my life. For Christmas my mom said she would pay for my dance lessons and I could not have asked for a better gift. After my first class back to ballet, walking extremely slow because my legs were so sore, I could not help but cry because I was so happy and thankful to be dancing again. There was a point this last year, when I was in and out of the hospital, that I was afraid that maybe it would be too difficult to dance again. I now know I can dance, and I have the be support system to help me through it and to get better. I'm hoping to start running again on my days off from ballet twice a week, and my softball games. Oh yea, I also joined a softball team for fun!

The one thing that I simply have no patience for, is for the Vertex drug, Kalydeco to be approved and released by the FDA. This drug is going to change my life forever and I can't wait to see my numbers go up even more. My doctors said that they had a meeting with someone this week and they are predicting it to be out in 2 months!!!! Ahhhhh!!! Two months to get my lungs into shape so they can become healthier than I ever thought would be possible again! I thank the Lord every day for what is going on at Vertex Pharmacuticals because I know with out all of the prayers prayed by every single person with Cystic Fibrosis and those effected by it, this would not be possible. This year will be one for the books! God is so good!