Before I start randomly posting things, I figured I would give a little background about myself and cystic fibrosis. I am the middle child with two brothers who are 26 and 14, both without CF. My parents had no idea that I would have CF, so they were definitely in for a shock when I was born. Shortly after I was born, I went into surgery to fix the obstruction in my intestines. I lost a little weight due to the surgery, so I had to stay in the hospital until I was back to my birth weight. It took me one month to gain that one pound back, but since then, I haven't been admitted into the hospital!
I don't have too many childhood memories of doing treatments (aka: airway clearance--different ways to make me cough the mucus out of my lungs) or feeling like CF was a burden on my childhood, I feel like I had pretty normal upbringing. I played softball and soccer, was in Brownies for a couple years, and was on the color guard in Middle School where I got to go to Disney World and be in a parade! I do remember that at the beginning of every school year, in elementary school, my mom would give my new teacher a pamphlet about CF so they would have a heads up about me. Also, because I have to take digestive enzymes before I eat (to help digest my food), I had to go to the nurse everyday before lunch to take my enzymes. Today, this has just become second nature to me to take them anytime I eat. I don't leave our apartment without enzymes with me! I had doctors appointments every three months to see my CF Specialist, and once a year I would have to go to Chicago to have a much more elaborate appointment with full Pulmonary Function Tests (PFTs), a blood test, and chest x-rays. My dad referred to this appointment as my "thousand-mile check up." Growing up, the only treatments I had included my nebulizers and chest percussions which my parents had to do manually. Thankfully, I was a very healthy kid!
In middle school, when I was in 7th grade, I got my very first Vest. The Vest is a machine that does my chest percussions for me. It is literally a vest that inflates and hooks up to a machine that shakes to loosen the mucus in my lungs. The machine itself was very heavy, big and bulky. If I ever wanted to move it, I had to drag it around or have my dad carry it around for me. I HATED my Vest when I first got it. I felt stupid when I did it and I felt like it didn't do anything for me. Since it was much more convenient, my parents were much more persistent about me doing my treatments everyday. I came up with every excuse in the book not to do my treatments (I'm tired, I have homework and it makes my writing sloppy when I write, I want to hang out with my friends...)--the one I used most was, "Oh, I just ate. I can't do my Vest because it'll give me a stomach ache." As an adolescent, it was very hard for me to realize the importance of doing my Vest everyday for 30 minutes. It was a constant fight between my parents and I for a couple years. I think I just needed to figure out for myself that it is what I needed to do to keep myself healthy.
I got better with doing my treatments everyday in high school. Especially when my parents wouldn't let me hang out with my friends until they were done. At the time, I thought it was the worst thing ever, but I know it was for my health. In college, I felt so much more independent and knew that it depended on me, and only me, to stay healthy. I felt like I had to prove to everyone that I could do it myself, without the reminder of my parents, and I did! My lung function actually went UP my first year of college because I kept up with them so well. A few years ago, my doctor told me to start doing my treatments twice a day (and I thought once a day was hard!), 30 minutes on the Vest each time, plus whatever nebulizers I'm on (3-4 different medicines depending on the month). This has definitely helped keep my lung function in the upper 80s, which is very close to normal!
I currently go to the University of Chicago Hospital every three months to see my wonderful doctor, Maria Dowell, who is a CF Specialist for children and adults. The clinic is great and I love the staff! I had the same doctor when I was little, Dr. Lester (Which reminds me, I better email her some wedding pictures soon before Dr. Dowell gets on my case about her asking, again!), until I was 18. I still keep in touch with Dr. Lester and usually see her every year at the Great Strides Walks (an entire separate post). When I turned 18, I moved to the "adult clinic" with Dr. Dowell. It felt so good to move up to the adult clinic! Years ago there was not an adult clinic because many CF patients didn't live into adulthood, but now they have their own clinic in the hospital!
I could go on and on about my life with CF, but this would be REALLY long. You'll learn more about it through my other posts. Thanks for reading it all, hopefully it gave you a little better understanding of how I grew up.