This WILL be a long post so please please please, be patient.
As most of you guys already know, I have Cystic Fibrosis. Some of you may know what that entails, but if you don’t and you’re thinking ”Well what the heck does that mean!?” or ”How do I even say that?!” That’s 100% OK! So I’ll start first a little bit about what the heck it means. :)
Firstly, Cystic Fibrosis (CF) is genetic. That means that it was passed down through genes in my family. I am the ONLY person in my entire family that has it…which in a way is kind of neat-o. My mother had one gene and my father had the other gene and then bada-bing-bada-boom, Cystic Fibrosis! Now, I am probably being a little too enthusiastic about this. The reason for that is because it doesn’t scare me, anymore. More about that later.
Cystic Fibrosis is NOT contagious! If I cough on you, you’re not going to grow a third arm or spontaneously combust. I actually used to have kids think I was a mutant because of some of the things I coughed up in elementary school. (Nasty discolored green yuckies.) The boys thought it was the coolest thing and always challenged me to loogy spittin’ contests (Which I always won, by the way. I know, I am such a princess.) The girls on the other hand…well, you know how they are.
Now I’m going to stop using words like ”yuckies” and get into the intense, grown up stuff.
Cystic Fibrosis is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food. This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man’s reproductive system. Most children with CF are diagnosed by age 2. I was one of those children. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease.
Cystic Fibrosis is progressive, so as you get older it gets worse. As of right now there is no cure for it, HOWEVER some people are able to take a medication that has recently been discovered called Kalydeco. If you are a mother or know someone that has CF, perhaps mention this to them if their doctor hasn’t already and see if they have the CF gene that the medicine can calm. How long you live really depends on how well you take care of yourself. My doctor (Katherine) puts it this way: ”Treatments right now are like life insurance. You feel fine now and you don’t feel like you need your treatments but later on down the road when you need new lungs, you’ll be thankful that you took all of those breathing treatments because you kept your lungs as healthy as you could for as long as you could.” So that’s why it’s important to take breathing treatments, and this big machine I have called ”The vest”. The vest shakes me and knocks some of the mucus loose that is stuck to my lungs too deep down to cough up. I have a very weakened immune system, so my body doesn’t produce Melatonin which is what your body produces throughout the day that makes you fall asleep at night. The effect of this is kind of bad. I have grown dependent on sleeping pills in the past, which at 19 isn’t the greatest thing. If I do not take sleeping pills, I just literally couldn't. Not for five minutes, not for ten. I just couldn't. Thankfully I overcame that. I had to force myself but I'm proud.
What it feels like: I really hope this doesn’t sound like I’m complaining. I’m not. I’m just trying to let you guys understand it better so that when I post about appointments, you guys don’t flip or something. It’s important to understand that people with Cystic Fibrosis do not have good lungs. I have the lungs of a woman who has smoked for years and I have never smoked a cigarette a day in my life. The best way I can explain to someone with normal, healthy lungs would be to tell them to cover their mouth completely with their hands and try to breathe through all of the small cracks in your hands. Or take a straw and try to breathe through it for ten minutes without stopping. That is how it feels for people with Cystic Fibrosis ALL THE TIME. Sometimes I catch myself mean mugging complete strangers when they walk by me puffing on a cigarette and then I have to remember that not everybody feels the way I feel. I’ve lost many friends that have Cystic Fibrosis and have three right now that are waiting for their turn to get a lung transplant.
Waiting for a lung transplant isn’t like waiting for your order at McDonald’s. It’s awful. It’s scary. It causes anxiety. No one can say ”Hi there order #284 your new lungs will be up in a second.” A donor has to die (Which is ALWAYS sad) in order for you to live. (Special shout out to all ya’ll donors out there, you guys are incredible!) Some CF patients die while waiting for their new lungs. It’s a terrible experience and my heart truly aches when things like that happen.
Another thing Cystic Fibrosis affects is my height. I’m 4’11 and a quarter of an inch. Pretty petite and cute, so that’s alright. But for all you suckas out there that call me short……………..I’M JUST MORE DOWN TO EARTH. ;)
As you can tell, I make a lot of jokes about it. That’s how I’ve learned to fit in with my peers. Growing up, I had a feeding tube in my stomach when I was diagnosed because I only weighed 14 lbs at age 2. I was very malnurished and if they didn’t do something soon, I was going to die. I never wore a bikini until the summer of my tenth grade year of high school. I was a one piece and a t-shirt kinda girl. I got my feeding tube taken out my 9th grade year. I had to beg them to take it out because I was going into high school and didn’t want people in gym to think I was a freak. After weeks of begging and pleading with my doctors, they agreed. Under one condition…eat like crazy. (Lucky me!) They took the feeding tube out and the hole left behind was supposed to ”close up on it’s own”. Yeah, bull hockey! I walked around with a hole in my stomach for an entire month, I kid you not, and anytime I drank anything, it came out of my stomach. Finally I was like ”Look, ya’ll. This is the tenth shirt that has been ruined by stomach acid, ya’ll have GOT to do something.” and the stomach acid was eating the skin around the hole in my stomach so they did a surgery and closed the hole up. My mom STILL has a video from me being doped up in my hospital bed while they rolled me away before surgery…and if she plays that for my senior banquet, I’m probably going to dissolve into the Earth. So now I just have a scar on my stomach and for people who ask what it’s from, I tell them I got shot. ;) They believe it because i’m pretty badout. Fact.
My doctors do have an estimate of how much longer I will live. I like to think of myself as someone who is pretty healthy for a person with Cystic Fibrosis because I have taken care of myself. Not only have I taken care of myself, but I have friends who will bite my head off if I skip a breathing treatment. Anyways, I do not know how much longer. My mother and I made it clear at a young age that it was not something that I wanted to know until I absolutely needed to know. (Unless I’m in need of a lung transplant, I don’t want to know.)
I get sick a lot, miss a lot of school, and I don’t get to be as active as most of my friends are. Growing up I did cheer and dance but my lungs got too bad to do that. But I can almost pinky promise you that I can still outdance anyone right off of a stage. :)
For all you debbie downers who are feeling sad right now, stop. As I mentioned previously, I’m not scared. I am a firm believer that God never gives anyone anything they’re not strong enough to handle and if God brings you to it, He’ll bring you through it. I have been more than blessed to be nineteen and be as healthy as I am, and I thank God every day for the breath to wake up every morning. All of this has only made me stronger.
You know those theme parks you can go to where you can buy tickets to jump to the front of the line to ride the ride first? Well, that’s exactly what Cystic Fibrosis is, my friends. It is not a curse, it is not a punishment. It is merely my ticket to jump to the front of the line to ride the ride first…only into Heaven. Not many people my age get to brag about being able to meet Jesus before everyone else.
I don’t want pity. I want you guys to know that I would not wish Cystic Fibrosis off of my life, ever. It has molded me and shaped me into an optimistic, bright young woman and I am proud of my mentality and my ability to speak strongly to those who have it and haven’t yet realized the beauty that lies beyond it.
If you read this whole thing, I genuienly thank you. It means more than you know. If anyone has ANY questions at all, please don’t hesitate to contact me on Twitter or if you want to do it privately, you can email me at
101onitgirl@gmail.com
Please be nice! Thank you for reading.