Shawna's Story
When I was 5 years old, I was sitting at the kitchen table and all of a sudden it hit me. I knew something was really different about me, but I wasn't sure. What other 5 year-olds took pills every time they ate and had doctor's appointments every two months? Finally, my mom explained I had a disease called cystic fibrosis (CF). I remembered hearing that word a couple of times, but I had no idea what it was.CF is a lung disease I was born with. My body produces too much mucus, and it sits in my lungs and bacteria grows and I get infections. It also affects my pancreas. The mucus blocks my enzymes from getting to my food, so I have to take them orally.
As I got older, my CF got worse. My first hospital visit was when I was 8 years old. It was really scary, but I got used to them. From that point on, my CF got worse and worse. One doctor's visit would change my life forever.
I remember my mom acting strange before this appointment - like she couldn't look me straight in the eyes. Every time she did, she would turn away or her eyes would water. She kept telling me that if I didn't start doing my breathing machines and taking better care of myself, I would have to get a lung transplant. For a while, I just wanted to be a normal kid, so I wasn't doing my treatments as much as I should have.
My doctor explained that my lungs were OK for now, but that if they kept going at the pace they were, I probably would have 2 to 3 years and then I might die if we didn't do something. Basically, my lungs are badly damaged and they might give in. At that time, I was 12 years old. He said I might want to start thinking about whether or not I want to be on a lung transplant list.
My mom and I had a long talk. She said it was really my decision. At first, it felt like a bomb was just dropped on me. I cried for a week and started to open up to my friends about what I was told. I knew I wanted to live, so I knew what I had to do. As I learned more about the transplant, my feelings started to change. I started to have faith in my doctors and in myself. It was like a big weight had been lifted off my shoulders.
I am now almost 14 years old. I am on the transplant list and I have a pager. When my pager goes off, I will go down and get a lung transplant. I don't think I could have gone through this hard time without the love and support from my family, friends and doctors. These people have given me so much help and they mean so much to me.
Right now, I am doing well. I have a feeding tube in my stomach and I have gained 35 pounds in one year. I have a stomach tube because I couldn't gain weight. People ask me all the time-, "How do you deal with it?" I just say that I'm a fighter and I will never let CF win. I have opened up to people and I will answer any question anyone has. I feel the more people learn about CF, the more they understand.
I know I am going to live life to the fullest and never look back.