Today has just been one of those days. I spent four hours after my 8 am class studying for a biochemistry quiz I had earlier this afternoon. I didn’t get home until closer to 4 pm. I’ve just felt so tired and run down lately, but I have no time for a break! However, I did take a break today when I got home.
Earlier today, I was with my experimental foods lab partner. She mentioned to me that she had just watched a documentary on Cystic Fibrosis and she had “ugly-cried” during the whole thing. I had no idea Netflix had this documentary and so I made it my mission to watch it as soon as I got home. Now, if you read my previous post, you might remember that God has convicted me of making Netflix my idol because I tend to “binge-watch”. You will be proud to know that I have not watched anything on Netflix since that conviction, and so I chose to watch only this documentary and nothing else-and I did it!
Of course, this documentary was heartbreaking. It drew me in. I met a 23 year old woman living with CF who was waiting on a double-lung transplant. The documentary also highlighted this young woman’s online CF community (if you were unaware, CFers are told to not be around each other because it is so easy for us to spread “super bugs”-infections-to one another). So we also met two of Eva’s (the 23-year old) online friends who also struggle with CF. One friend, Kina, had a double-lung transplant previous to meeting Eva, and so was able to be a wonderful support system for Eva. The other friend, Meg, was a little different. Meg actually chose to smoke and was a “substance abuser”. It was very sad. I couldn’t imagine being a smoker while living with this disease that makes it hard to breathe already.
Anyway, I got to follow Eva on her journey of waiting to get her transplant, as well as actually getting the transplant. I watched as the surgeons placed her mucus-filled lungs outside of her body. The camera actually did a close-up on her old lungs, and you could SEE the mucus that was literally spilling out of them. Now I realize that sounds extremely gross…BUT, imagine that your lungs were filled with mucus. Literally. Living with CF, you are drowning in your own mucus. That’s what makes it so hard for us to breathe normally.
So Eva got her new lungs. But just a year later, she went into chronic rejection, meaning her body started to reject her new lungs. Eva’s health declined once more, and within a short while, Eva passed away. I ugly-cried today. For the entire hour and a half of this documentary. I never want to end up like that. I’m so thankful for the good health that I have had, and I hope to have it for the rest of my life. Thankfully, most CF patients do not need a lung transplant until their thirties, which is the current life expectancy. I never want one.
I’m thankful that my lab partner told me about this documentary because it reminded of what is important. Eva had a lot of the same dreams that I have had since I was little. Eva expressed her desire to be a mom, go to school, and be successful. Sadly, she never got the opportunity to even finish school. I, on the other hand, am about to enter into my senior year of college. I would absolutely LOVE to be a mom someday, and of course I want to be a successful dietitian. But I have to remember that in order to do and be all of the things that I desire, I have to take care of myself.
It seems that it is so hard to fit all of the treatments and pills into my day, not to mention fitting in everything else in my life. I actually HAVE a life! But I need to remember what is important, as Eva did. I have to remember that I don’t want a lung transplant, and I want to live a long and healthy life so I can do all of the things that I know God has called me to do. So there is that…just a small part of what is currently motivating me to try and do my treatments on a daily basis!
One other pretty cool thing happened today. A couple of my nutrition friends happened to mention to me that they knew of a girl that goes to Tech and has CF. I was surprised! I had no idea there was anyone else with CF going to Tech. So I looked her up on Facebook today and messaged her. Brave, right?
Well of course we hit it off instantly. When you meet someone who has CF (most of the time you don’t meet them in person), you are automatically friends. I would even venture to say family because you aren’t afraid to share your secrets. At least I’m not! This young woman, who is already a senior at Tech, is actually a RHIM (restaurant, hotel, and institutional management) major-which is my minor! So we’ve actually taken a lot of the same classes, and we came to the realization that we have probably seen each other in the human sciences college quite often (I thought she looked familiar!). We are actually texting as I am writing this post. So since about 7pm today, we have talked about our CF care team, our lung function percentages, our struggle with doing treatments every day, and the different breathing treatments and pills we do and take. We actually have the same gene mutation-deltaF508, so that’s pretty cool! Alex (that’s her name) told me that she doesn’t have an online support system like I do, so I suggested that we be that for each other and she agreed. It turns out that there is another girl in her sorority that has CF-that’s 3 total on Tech campus! Crazy!
It makes me so happy to know that as CFers, we are so willing to support each other in all that we do. We are the only ones who can understand what the other is going through-the daily struggles that no one else sees…everything. Of course, it’s always nice to know that I’m not alone. Alex and I both struggle with feeling tired all of the time, and we don’t do our treatments as often as we should. I’m so grateful for this new friendship though. It’s through friendships such as these that we can not only struggle together and empathize with one another, but we can encourage and support each other as well.
I’m so excited to get to know Alex more. I only wish we could meet in person and give each other a hug! Where is that cure?!