Recognition!

Check out the recognition the CF Foundation as well as Vertex Pharmaceuticals Inc. is getting for the groundbreaking drug that addresses the underlying cause to cystic fibrosis!

http://www.cff.org/aboutCFFoundation/NewsEvents/10-25-Kalydeco-Wins-The-Wall-Street-Journal-Award.cfm

Only a matter of time for more to come!

Keep Fighting, Keep Breathing, Say Tomorrow

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Happy Halloween!

Check out this link about Party City supporting the CF Foundation:

http://www.cff.org/aboutCFFoundation/NewsEvents/10-5-CFF-Joins-with-Party-City-to-Raise-Funds.cfm

Donate $1 at checkout to put your name on a pin-up and raise funds toward the cure of cystic fibrosis! Tell your friends to shop at Party City for this Halloween’s antics!

Thanks Party City!

Keep Fighting, Keep Breathing, Say Tomorrow

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Hold On

Throughout my younger years all the way up through secondary school, I had my CF pretty well maintained. For me, my lungs were never the big issue as much as needing to gain weight. But, I was never hospitalized from when I was about five years old until I was eighteen.

I decided to attend the University of Hawaii at Hilo my senior year for two reasons: to get away from Colorado and to be closer to my dad. Little did I know that my lungs had grown accustomed to the dry mountain air and a humid tropical paradise would be detrimental. When I came back for Winter Break, I had a routine check-up that I thought wouldn’t be any different than any other time I went. Instead, my lung functions were down about 30%. My doctor told me he thought admitting me to the hospital immediately to start IV antibiotics had to be done.

For 13 years I had sat in that exam room hearing the same thing over again: “You’re doing great. Keep up the good work.” And now, my doctor was telling me I was ill beyond where either of us thought I would be. My heart sank and my world at that time came crashing down. I was going to have to transfer back from Hawaii; juggle going to school, having a job and becoming familiar with my new IV treatments; I was having to say goodbye to what I wanted my life to be.

A couple years later, I graduated from Colorado Mountain College with an Associates Degree and planned to attend Boise State University in Fall 2010. Because of the many rounds of antibiotics I was on, I had (and still have) a portacath that must be flushed every month. Two days after moving up to Boise and into my luxurious on-campus apartment, my portacath was due to be flushed. When I went to get it done, it didn’t draw back blood which could mean that it was clotted, and if it was clotted, it would be dangerous to still have it in my body. And, because my health insurance was based in Colorado, I wouldn’t have been able to have a procedure done in Idaho in order to fix the problem. Once again, the new world I had just moved into in order to get on with the life I wanted to live seemed to come crashing down. I thought that if the blood thinner doesn’t work, I would have to withdraw from BSU and move back to Colorado again.

There have been points in my life when I do stoop to a low morale. During both of those instances I have described, I felt like I wanted to roll over and let my CF run my life. Sometimes I felt I was more of a liability to my family and close friends rather than an asset. Even to some extent, I have asked myself, “Why is this life we have worth living?”

After I transferred back from Hawaii, I put myself in an environment that wasn’t damaging to my health, I could still go to school and work, as well as take care of the IV antibiotics I needed to take. Looking back now, I don’t regret going to Hawaii, but I also don’t regret coming back. It all worked itself out.

Luckily, after the blood thinner worked its magic, my portacath had blood drawback and I was able to have peace of mind that I could stay in Boise and pursue my education where I wanted to.

At the time, they didn’t seem like it, but these instances were only blips on my radar and because I kept fighting and breathing and waking up every morning continuing to live the life I have been given, I am able to put those blips behind me and move forward with open eyes and a clear mind, looking out for what is best for me as well as my health.

In the words of Good Charlotte:

Hold on if you feel like letting go

Hold on it gets better than you know

These words have been my mantra (along with “Here I am Alive”) during the difficult times I have been going through recently, and will continue to bring me strength and courage to wake up every morning and say, “Today’s a new day.”

Check out this music video I made all by myself during this last week to the song I mentioned above, Good Charlotte’s “Hold On.” It’s nothing special but you will see me being me, and also hear a song that helps keep my mind holding on to what good can come next.

Keep Fighting, Keep Breathing, Say Tomorrow

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