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I have a terminal genetic disorder called Cystic Fibrosis.
Cystic Fibrosis affects my lungs and my pancreas. It makes my mucus really thick and sticky which clogs my lungs making it difficult to breathe, but it also holds infections often making me sick with Pneumonia putting me in the hospital for weeks at a time. The mucus also clogs my pancreas which prevents my body from creating the enzymes needed to break down food and absorb nutrients, which means gaining weight is next to impossible.
That`s the text book definition of my disease, but what does it mean to me?
Having Cystic Fibrosis means I`ve never had the life most people have, a normal one.
I spent most of my child hood in and out of hospital rooms, at doctors appointments and doing Many treatments.
As a Cystic i take a lot of different medications including 5 different breathing treatments and 60 pills a day.
Now the hardest part of having Cystic Fibrosis isn`t the medications for the treatments, it`s not even being in and out of the hospital.
Well there comes a time in life when you have to realize and accept the fact that you`re not going to live as long as the average person. And while i`ve recently celebrated my 20th birthday it also marks the halfway point of my life expectancy.
A lot of people think saying things like that is being negative and i have to say unless you have this time in your life you will never understand it.
Realizations like these aren`t always bad though, they`ve helped me work hard and fast to accomplish my goals. It makes me realize how sweet life is, and i appreciate every single moment i have with the people i have.
I`ve never been one to be kept down by the hospital stays or the medications every since i can remember i spent my hospital stays putting colorful decorations on the walls and keeping the rooms filled with music.
There isn`t a cure for Cystic Fibrosis yet, but they are coming really close. There is only one thing that comes close to a cure, but it`s not one at all and that`s a double lung transplant.
When i was about 8 years old i was put on the double lung transplant waiting list. I had been extra sick that year and my doctor thought it was time. I was sent from the Detroit Medical Center to the Children`s Hospital in St. Louis where i was evaluated and later accepted onto the list.
When i was 12 i received my first medical port, which is a small button like device that goes under the skin on either the chest or the arm, mine was on the right side of my chest. It is installed in patients through a quick surgery. I had to have this because the veins in my arms would no longer hold I.V`s i was going through 36 I,V`s a week on my hospital stays. It sounded like a blessing at the time.
But it wasn`t long before it became more of a hassle.
I had a few med ports break or just stop working the worse case was when i was 15. My med port got infected which led to a blood infection. I`ll never forget the day the doctor told my parents he`d seen two other kids infected with the same infection and neither lived and he didn`t have high expectations for me to either. I was out of school for over a month, i`ll never forget my first day back. The kids kept looking at me weird finally i asked one of my friends why? They told me the rumor went around school that i`d died.
At 13 I received a feeding tube, because gaining weight was next to impossible, i was 5 foot and i weighed about 60lbs at the time. I was lucky enough to have it removed this past May because i no longer needed it. My weight is perfect for my height.
Those are my surgeries, they were hard and painful but i lived to tell the tale.
I don`t use them to be negative even though they are hard for me to tell people sometimes most times. I don`t think i`ve ever actually told anyone all that. A lot of people don`t know about my blood infection, not my closest friends even know how close i was to ending.
And as hard as all that was, it`s not the worse part of my disease.
One thing it means to have Cystic Fibrosis, the part that really makes it impossible to live a normal life are the medical bills. Insurances one provided by the state as I am a receiver of disability, the other one if from my Dad`s work.
Receiving disability pretty much means i`ll never be able to have a job or i am at risk for losing that insurance.
My dad`s insurance pay`s the majority of my medical expenses but i won`t have it forever, that means i`ll have to start paying the bills.
It cost over a Million dollars a year for all the medications i take, not including doctors visits, hospital stays or medical procedures. That means i`ll never have a normal life, i`ll never be able to go out and buy a new car because i could never afford.
It breaks my heart when i think i`ll never be able to have my own house, because i love decorating and i like a lot of kids i always had my dream house picked out.
I feel like a bum, because i don`t have a job when all of my friends do. I feel like i`m living my life wrong, because i can`t have those things. It`s funny i hear people complain about their jobs all the time, but i would give anything to be able to work again.
I used to have a job when i was in high school, two actually and i went from making $500 every two weeks to $700 a month.
I hear people make rude comments about the people who are on Disability and how they use the government to get "free" money. I just wish sometimes those people knew how much that "free" money really costs. Or that it`s some peoples only way to receive insurance.
I`ve always wanted to inspire people to be better, that`s been my goal for as long as i can remember. With music as my passion i hope someday to start a charity to bring music into not only children`s hospitals but adult hospitals too.As i transferred to an adult hospital i`ve realized how over looked they are and it makes me sad.
While i was in the hospital i used to give classes on how to decorate your hospital room, I can no longer do this because with my CF i can`t volunteer in hospitals, but i would love to train others and donate supplies and send them to hospitals all over the country and maybe the world. There`s nothing worse than being sick and having to stare at white walls that look just as sick as you do.
These are just a few of my hopes and dreams,
I would never wish mu CF away, a lot of people think i`m crazy for this, but i owe a lot to my Cystic Fibrosis. Without it i wouldn`t appreciate life the way i do, and i wouldn`t have the opportunity to teach others that they have something to live for and to fight for.
Nothing is hopeless, and every day is a chance to take a deep breathe and see something new.