The day I was diagnosed with Cystic Fibrosis is the day that I realized how precious life really is. Nothing gives you more of a wake-up call than going from a nine-year old girl who had nothing to worry about except getting her school work done or making sure she listened to her parents than to a life where she had to fight every day to live.
Cystic Fibrosis (CF) is a life threatening genetic lung disease. It causes a build-up of thick, sticky mucus that blocks the airways which makes it very difficult to breathe and also allows for the proliferation of bacteria. With this, it causes extensive lung damage and eventually respiratory failure. It is common for people who have cystic fibrosis to not be able to properly digest food and absorb nutrients due to the production of thick mucus that prevents the release of digestive enzymes.
In order to allow this, medications are taken before/after every meal to digest food. There is currently no cure for cystic fibrosis. The current life expectancy is around 37 years old. You may be wondering why I had such a late diagnosis and that is due to the fact that I went under the radar.
When I was born, newborn screenings weren't available and we didn't know that both sides of my family carried the defective gene. It wasn't until my sister, Grayson, was born and we had found out she had it. From there, the whole family was then tested and that was when we found out I had it as well.
For those of you who know me, you know I do not talk much about CF. I love to educate anyone about it but I don't really talk about how hard it can be sometimes. I try to remain as positive as I can because what else is there to do? I am living and I am breathing and I have a beautiful life. I’m not going to let a life expectancy or a disease stop me from being who I am. Stop me from getting the most out of my life. Because although I have been through a lot, it has made me stronger.
It's shaped me into who I am and why I have such a love for life and happiness. You don't realize how lucky you are to be alive until you are in a hospital room for weeks on end hooked up to a bunch of machines pumping medications into you just to get you to breathe half as normal as everyone else.
My typical everyday routine consists of doing what is called a vest along with taking various medications. The vest is attached to a tube that connects to a machine. This machine then pumps air at a very high rate through the tube and into the vest, inflating it and causing you to shake (it's very funny whenever I'm talking with it on).
The importance of the vest is that it basically keeps the mucus and bacteria in your lungs moving instead of sitting there and growing. I do this two times a day for 30 minutes each and four times a day when I am sick. I also take at least 10 medications a day just to keep me healthy. It is very common when we get sick, to be admitted to the hospital for weeks on IV medications to fight the infection in our lungs.
One of the things I find most difficult is seeing how it affects the people I love. I hate it. Nothing hurts more than hearing my mom cry in the other room, venting to my dad after finding out I need to be hospitalized again. It crushes me and I wish I could stop it. I wish I could tell my mom not to worry and that I’m okay. But I can’t and that’s what kills me more than anything. I don’t have any control over cystic fibrosis and that is why I strive so hard to keep up with my medications and my vest to keep me as healthy as I can. I am so incredibly grateful for every single person in my life, you know who you are. Each individual has a part in why I am able to overcome these obstacles and I thank you.
Cystic Fibrosis does not define me. It is a part of who I am and a part of my life but I will never let it take over. I will live every day to the very best and never stop fighting.
