Friday, August 17, 2012
This is me!
I'm Amanda, I'm 19 years old and I have a chronic lung disease called Cystic Fibrosis. I was two months old when I was diagnosed with CF. CF is a genetic disease in which both parents pass along a defective gene. It effects the lungs, sinuses, and digestive system. You can read more at www.cff.org.
Throughout my life I have had many, many trips to the hospital, most of which result in at least a two week stay. I have a G-tube placed in my stomach and at night I hook it up to a machine that pumps in formula, which helps me gain weight because I'm malnourished. I also have a Port placed in my upper left chest (kind of in my cleavage area) and I use that for my IV's I have to get when I'm in the hospital. They stick a needle right into it and that's how I get antibiotics. I've had many different types of procedures M in life. I have lots of scars from all of it. In this blog I will be talking about what my "PFT's" are. PFT stands for Pulmonary Function Test, which measures how much air I breathe in and out my lungs and how much of my lungs I'm actually using. For someone healthy with no lung problems their PFTs would most likely be above 100%. My PFTs last year were at a baseline of 45%-47%. Within the last six months my baseline has dropped to 32%-35%. And since may I haven't been able to get them above 28%. Three weeks ago they were 23%. The rule of thumb use to be once someones PFTs dropped below 30% they were put on transplant. My doctors and nurses are incredible. Dr. Richard Cohen has saved my life more times than I can count. And since I've spent so much time in the hospital throughout the course of my life, the nurses at Doernbecher Childrens Hospital and Kaiser Sunnyside Hospital have become like a second family to me.
If it wasn't for my family being here and keeping me sane, I would have gone crazy by now. I have a brother and sister, both younger than me, that I absolutely adore! They mean the world to me. Ashley is 17, she's my best friend, someone I can tell just about anything to and the person that has always been here for me when I needed anything. Even though I'm technically older, she takes care of me like an older sister would. Austin is 13, he's very athletic and amazing at what he plays. I like to say I'm his biggest cheerleader! He always knows how to make me laugh and he always helps me keep a smile on my face. He's also one of my best friends. I would be lost without those two! I love them to the moon and back! Then there's my mom, my hero, my best friend, my rock, my biggest fan, and number 1 cheerleader! She's always on my side! If it wasn't for my mom, I truly believe I would not be here today. She means the world to me and I don't know who I'd be without her. I love my mommy soo much! I look up to her and how strong she is. I owe her my life. Thank you mommy for always fighting for me and never giving up.
As you can imagine having CF and going to hospital for weeks at a time, can make going to school a real challenge. My whole life going to school was always a balancing act. Constantly playing the catch-up game. Having to miss school was probably one of most difficult consequences of cf to overcome. Because I missed so much, I ended up having to go to a tutor to help me catch up on what I had missed, multiple times. I missed important lessons, dances, activities, sporting games, and just the experience of going to school like a normal kid. My friends helped me an enormous amount when it came to school things. Lauren (one of my best friends) always tried to include me in things that were going on at school. And help me with what she possibly could. As I got older, my lungs started to get worse, which meant more hospitals stays and more missed school days. From my sophomore year on, I made the decision to be home schooled. It was really hard. I got depressed because I knew I was missing out on so many things and I felt alone. My senior year, I was a year and a half behind on credits due to being sick. I wasn't on track to graduate with my class (which was a BIG goal of mine that I wasn't about to give up). Somehow I managed to get all those credits and I got to walk with my class!! Now that I'm in college, it's a little bit easier for me to complete my classes because they're on my time. Last school year, I went to school winter term and spring term. I passed all my classes winter term, but I was extremely sick spring term and spent most of it in the hospital and failed all my classes. It's hard for me to accept the fact that I am to sick to return to school this fall but it's reality. I had always dreamed of graduating high school and going away to college with all my friends. Living in a dorm and joining a sorority were the two things I looked forward to. But the two things I had to give up and watch all my friends do instead.
Going to community college isn't what I had in mind for myself a few years ago, but it's what I had to do. I couldn't be happier with that decision because it lead me to my boyfriend Aaron. Aaron and I had a writing class together spring term. We were doing a group project in class one day and he got put at my table. From that point on we've been insuperable! He's had a HUGE impact on my life and health. I had a few boyfriends throughout my life but no one can even come close to compare how much I truly mean to him. And how much I truly care for him. He helps me every single day, with all of my daily medicines, breathing treatment, and whatever else I may need. He's incredible and everything I've always wanted in a man! He makes me laugh, smile, and when I'm upset he always knows how to fix whatever's wrong, I can tell him anything and know that he's not gonna judge me upon it. In the three short months we've been together, he's become my best friend. There isn't one thing I don't absolutely adore about him. I love him and his family with every piece of my heart. And I hope to someday call them my family! Thank you baby for everything you've done for me! I love you!
I'm sure I'll think of more stuff later. But that's pretty much my life in a nutshell. So, I'm starting this blog for a couple reasons. First; I want to bring more awareness to Cystic Fibrosis and second; I am getting really close to the point in my life where I'm going to be needing a lung transplant and I want some place I can vent and talk about what's going on.
I will be posting updates and what not, probably every few days or so. I have lots of appointments coming up this next week, which are gonna be deciding a lot of important life decisions. Thank all for your support and love!
- Amanda :)