I’m 23 years old, and I was born with a disease that affects only about 30,000 people in the US called Cystic Fibrosis. It is a genetic illness that takes its toll on your lungs, pancreas, liver and intestines. It can lead to Diabetes, Liver failure, Osteoporosis and infertility in males are the main things that can happen, but the other effects of the body are endless. The genetic defect causes my body to make extra thick sticky mucus that settles in my lungs and traps bacteria leading to serious lung infections. This can cause irreversible damage and scarring to the lungs and leads to wearing oxygen 24/7 and the lowering of lung functions, eventually leading to lung transplant or death.
In 1959, a child born with CF wasn’t expected to make it past 6 months old. With the recent improvements in medicine the life expectancy of someone with CF is 37 years old. Most people who are healthy have a FEV1% of 100% or higher. The FEV1 test measures the amount of air we can breathe out within one projected breath. Those with CF are lucky to have half of that. When you reach 30% is when the doctors start thinking about lung transplant, right now my FEV1 is 20%.
I had a healthy childhood and early teenage years. Since I turned 17 I have been in the hospital about 27 times. The only reason I can keep track of how many hospitalizations is I can count the scars on my arms from PICC lines. PICC lines are more permanent IV that go into the arm and leads all the way into the main artery to your heart. When I’m in the hospital for a lung infection I’m treated with IV antibiotics for a week or longer. I then continue the rest of the course at home, every 8 hours, for a total of 3 to 5 weeks. On a daily basis I take 30 or so pills, breathing treatments several times a day. Also a therapy vest that puffs up with air and shakes me so that the mucus in my lungs will break up and loosen so I can cough it up and help with preventing infections. I take four enzyme pills before each meal that help break down my food so it can properly be digested it also provides some of the nutrients I need since my pancreas doesn’t release enzymes on its own. For this reason it’s always been very hard for me to gain weight and keep it on. In 2008 I had a feeding tube placed in my stomach to help me gain weight.
I have met and know many others with CF that I communicate with online. Some are doing pretty good and others I’ve known have passed away, some unexpectedly and some who were waiting for their call for new lungs. It can be a great support system, but at times it’s very hard to see what could end up being your fate. I can’t tell you how many times I have heard “Well, at least you don’t look sick!!” It’s often hard for people to understand exactly what I go through because I don’t “look the part”. I am your average looking 23 year old female, the only suspicion you’d have of my Cystic Fibrosis is maybe my cough and that I’m skinny. The emotional toll can be just as bad as the physical sometimes. I was healthy for a CF kid and to have my health swept right from under my feet was surely not easy. Wondering if I’d be healthy enough to go to college, career, or maybe have kids and get married. I tried college and working two jobs when I graduated high school, but eventually my health was no longer stable enough to balance everything. So I concentrate on taking care of myself which can be a full time job, hanging out with friends and family and doing things I love. I see most of my friends now starting up careers, marriages or relationships and having children. While I am trilled for them I can’t help but feel a little left behind.
help but be sad. Every day research is being done to help find a cure and for new drugs to help improve symptoms of CF. Just the other day a brand new drug was approved that dramatically helps those with a certain gene that 4% of people with CF are affected by. The others are still waiting for a new drug or a cure. That’s where the public comes in and why donations and awareness are so important. This is definitely not to get sympathy from anyone that is not what I want. I just desperately want people to understand a little about what it’s like to deal with CF and to spread awareness, so that a step in the right direction can be made! The new drug that was just released would have never been made possible if it weren’t for donations. Thank you so much for listening!!!
Breathe Easy,
Amy
