My Life With Cystic Fibrosis
Start writing a post
Health and Wellness

My Life With Cystic Fibrosis

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.

379
My Life With Cystic Fibrosis

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.

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
houses under green sky
Photo by Alev Takil on Unsplash

Small towns certainly have their pros and cons. Many people who grow up in small towns find themselves counting the days until they get to escape their roots and plant new ones in bigger, "better" places. And that's fine. I'd be lying if I said I hadn't thought those same thoughts before too. We all have, but they say it's important to remember where you came from. When I think about where I come from, I can't help having an overwhelming feeling of gratitude for my roots. Being from a small town has taught me so many important lessons that I will carry with me for the rest of my life.

Keep Reading...Show less
​a woman sitting at a table having a coffee
nappy.co

I can't say "thank you" enough to express how grateful I am for you coming into my life. You have made such a huge impact on my life. I would not be the person I am today without you and I know that you will keep inspiring me to become an even better version of myself.

Keep Reading...Show less
Student Life

Waitlisted for a College Class? Here's What to Do!

Dealing with the inevitable realities of college life.

85610
college students waiting in a long line in the hallway
StableDiffusion

Course registration at college can be a big hassle and is almost never talked about. Classes you want to take fill up before you get a chance to register. You might change your mind about a class you want to take and must struggle to find another class to fit in the same time period. You also have to make sure no classes clash by time. Like I said, it's a big hassle.

This semester, I was waitlisted for two classes. Most people in this situation, especially first years, freak out because they don't know what to do. Here is what you should do when this happens.

Keep Reading...Show less
a man and a woman sitting on the beach in front of the sunset

Whether you met your new love interest online, through mutual friends, or another way entirely, you'll definitely want to know what you're getting into. I mean, really, what's the point in entering a relationship with someone if you don't know whether or not you're compatible on a very basic level?

Consider these 21 questions to ask in the talking stage when getting to know that new guy or girl you just started talking to:

Keep Reading...Show less
Lifestyle

Challah vs. Easter Bread: A Delicious Dilemma

Is there really such a difference in Challah bread or Easter Bread?

51521
loaves of challah and easter bread stacked up aside each other, an abundance of food in baskets
StableDiffusion

Ever since I could remember, it was a treat to receive Easter Bread made by my grandmother. We would only have it once a year and the wait was excruciating. Now that my grandmother has gotten older, she has stopped baking a lot of her recipes that require a lot of hand usage--her traditional Italian baking means no machines. So for the past few years, I have missed enjoying my Easter Bread.

Keep Reading...Show less

Subscribe to Our Newsletter

Facebook Comments