Blog Make-Over!

Welcome to my blog!

I am currently giving it a make-over. As you can see it has been some time since I have written, so, thank you for your patience as I beautify my page!

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...

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm289633.htm

http://online.wsj.com/article/SB10001424052970204740904577195144014038270.html

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!

You will always be in my Heart

So, I don't even know where to start, mostly because I don't know where I left off last time. So much has changed since last time i wrote. I have moved back to my home town Redding. I started living at my momma's house, moved out and got my own place, got sick, got well, and the next month got sick again. Found out I had to move back in with my momma because the house I was living in had a mold issue. In July I had a feeding tube placed, which hurt like hell! Im finally starting to gain weight since I've been sick so many times since I have had it. The plus side is that I have not lost any weight at all. Even with all this moving around and having many changes going on in my life there has only been one thing on my mind everyday. My best friend, Alyssa Crank, passed away July 17 because of Cystic Fibrosis. Even though I knew that it was coming, I never thought that she would pass away that soon. Part of my heart was torn that day. This is when I hate all those little cliches in life, like, life isn't fair. Life truly is not fair, and it does not make make any sense. She was the biggest fighter I knew, the strongest person. Alyssa, in her tiny little body, had the biggest heart, best sense of humor, and the strongest will to live. It really sank in at her memorial service. She was always there for me no matter what, she was a true friend. I can't even start to explain how much I miss her. It's very hard not to be selfish and want to see her again when I know she is laughing without coughing, dancing without getting short of breath, and celebrating the amazing breaths that she can now take in heaven. I still can't believe she is gone though. It scares me so much because she passed away from something that I have. It's made my disease more real to me than it ever has been before. Loosing has made me try to fight this battle even harder. I can't and I will never give up because she never did either. Words really can't explain how much it hurts to loose you best friend. I long for the day where I get to see you again and we can both truly breath forever. Alyssa Marie Crank you are forever loved and you will always be in my heart. I love you and miss you.

Finding your Motivation

Trying takes every fiber of body. For some reason to keep trying is the most difficult when times aren’t the hardest. I get exhausted so easy. You think that your LIFE and the number of days you have depending on how well you take care of yourself would be enough of an influence. I guess its not so much as its hard for me to keep on trying but for me to stayed focused on the future 100% of the time. I have to stay focused and think about my future every single day, the moment I wake up, the second I get ready for bed, and many times in between. I want to be able to live in the present, but for me to have more time I can’t. Inhalers all the time wear me out. I have to always remember. Remember is the hardest when I’m feeling good; like right now. I get so excited that I’m doing so well that I forget that I have to keep at pushing more so I stay like that. This time it has been a little bit easier because I haven’t just been focusing on life in general, but another life. To clear the air right away, no, I am not pregnant nor plan on getting pregnant anytime soon! BUT I do eventually want to have a kid. Talking to the doctors this last time helped me become more positive and confident in myself that I will one day be able to have kids; as long as I keep trying to get my lung function up and it stay up. After being off of I.V. antibiotics for about a month now my lung function is up to 60%! Now for me, that’s good, since I haven’t had numbers that high in a while. I want to get them higher though. My goal is to get a steady baseline of 65%. Having this new motivation (even though I don’t have anything planned for the near future) has helped me see life in a new, positive way. I encouraged everyone of you CFer’s to seek out that motivation and keep fighting whether its good or bad times; cuz remember you gotta keep on fighting today to get a better tomorrow. Sending love to all of my CFer’s out there, love you all!

B

rushing through life a bit

I know I haven't posted in such a long time, so here it goes. Lately, everything in my life has been going perfect. I've been able to juggle both work and school, and still not get sick. Everything with my family has been great and things with the boyfriend couldn't be better. Even though things are going so good, I can't help the feeling but to want to more. I'm feeling great and I have been out of the hospital for I think 6 months now. It makes me so happy. Feeling like this makes me want it not to end. This makes me want more while I'm still feeling good because I know the second my health goes down hill my life freezes. When I feel this great I want to do everything and go everywhere.; which is the bad part. I feel good so I go out and have fun. I think I can handle it but eventually I know I will start spiraling down. It's so hard to to have to keep yourself from having fun and living life so that way you can live more life (I hope that just made sense.) I just want to all now; so that way time doesn't run out before I achieve it.

~B

To all my CFers...