Cystic Fibrosis?

      I've been thinking about writing of this blog so many times the last past few days BUUTTTT....  I knew I would have to do this one next so I was kind of avoiding it. Not because I don't like to talk about what Cystic Fibrosis is, but because it's so complex. It's not the same for everyone who has it. So I guess I'll begin with what it is and then on how it affects me.

Cystic Fibrosis is a life threatening genetic disease that causes 

thick sticky mucus to build up in the lungs and pancreas. 

THERE IS NO CURE

 The average lifespan is 

37 years old.

About 30,000 people in the US have Cystic Fibrosis.

1 in every 31 Americans are carriers of the defective gene.

With CF some cases are worse than other. Some people can go years with out ever being hospitalized, while others are in and out of the hospitals every month.

Me, when I was little

Lets start with when I was diagnosed...

     I was diagnosed with CF at 6 months old. My mother noticed that I was getting sick and something just wasn't right. My parents took me to the emergency room where they did a bunch of test. They found that my electrolytes were the lowest that they have ever seen on a living person and decided that I needed to be flown out ASAP. (Let me say here that our hospital was not the best, not even close. I live in the Florida Keys, which is over 100 miles to "actual" hospital.) But that was where things were complicated.. to be flown out you need to have a credit card to put down for the transportation and my parents did not have one at the time. My doctor knew that this was a matter of life and death, reached into his own pocket and put his credit card down for the flight. It still brings tears to my eyes this day, thinking about how caring some people are. He literally saved my life that day.

         They flew me out to Miami Children's Hospital, one of the best children's hospital in the US. There they did even more test while I was in ICU. After a few more test over a couple days, they finally tried a sweat test and that's when my parents life was flipped upside down. The doctors told them that I had Cystic Fibrosis. I can't imagine what my parents felt when they heard those words and found out what it really was. At that time the life expectancy was 18 years old. I'd be lucky to make it out of high school. 

       But thing's were not as bad as they though. I got better and live a normal life, going to school, playing with friends. It was almost like I didn't even have CF. I took pills before meals and did a treatment at night, but other than that everything was perfect. Some times I even wondered if the test was wrong, maybe I didn't have CF and I didn't have to do treatments. Even when I would spend the night at a friends house and skip out on treatments I didn't feel any different. Maybe it was all just a mistake and it was someone else's results? I didn't ever feel bad, short of breath, or never coughed like they said I should. I never told anyone about my CF, I don't know if it was because my family never talked about it or if it was because I actually didn't believe it. But soon that would all change, I would believe, and things would get worse...