I am 24 years old. I have 2 younger sisters, neither of which have Cystic Fibrosis [CF]. Katie is 19, lives with her dog, cat, 2 birds, and a human roommate. She is currently in nursing school. Abby is 21, she lives off campus with her roommate. She is in school for international studies with a focus in the middle east and a minor in Arabic. I live with my mom and 2 dogs. We have an 11 year old greyhound named Penny. I recently got a puppy. He was born December 4, 2015. His name is Sherlock Holmes and he is a Bernese Mountain Dog. This is my first puppy, and they are A LOT of work! I’m not in school right now, but I plan on going back. I want to be a forensic psychologist. I love to read. I am never without a book, there’s always one in the room. 

Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people wit CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.” This comes directly from the CF Foundation, cff.org

There were a few differences between me and my sisters and friends. I was always the last person to be dropped off at sleepovers and the first one to be picked up. I had to go home and do my breathing treatments. I took pills when I ate and through out the day.

I was a pretty healthy kid, well healthy for a kid with CF. I was hospitalized when I was 2, then not again until 3rd grade. The older I got the more frequently I was hospitalized. It got to the point where I was in the hospital more than I was home.

I was waiting for lungs for about 4 years. I was at a center that played games, they seemed more intrested in money more than patient care. I felt like a number. I started looking for other places. I found and was listed [for transplant] at Ohio State University [OSU] in Columbus, Ohio. This center made me feel like a person, not a number. I got the call that they had lungs for me 1 day shy of 2 months after being listed.

The most obvious change is that I’m able to breathe without struggling. And really, it’s the little things, the things most people don’t give even half a second to think about. Being able to get dressed in a few minutes vs 30+ minutes not because I couldn’t decide what to wear, but because it wore me out. Being able to walk to the kitchen to get a snack or a glass of water, where before my oxygen tubing barely reached. Being able to take my dog outside. Being able to go places and not having to recover for days. Being able to walk from one end of the house to the other without stopping to take a break and gasp for breath. Being able to go places without oxygen and a wheelchair, where before I would have to use a wheelchair everywhere we went. Those are a few ways my life has changed.

I’ve learned that most people who are not donors have some fear that usual turns out to be untrue. For example: people are afraid that if they’re in a car crash or go to the ER, the paramedics or doctors won’t work as hard to save them because they want their organs. This is untrue. It’s not the doctors who deal with donation, it’s a totally different department. The doctors job is to save you, donor or not. The more people question and talk about why they aren’t donors, the more they learn, and hopefully the more people will sign up.

I also volunteer with Life Center, which is my local organization that goes around to different places and events to raise awareness for organ donation. I love doing it. I love talking to people about my experience and I think it helps people see that organ donation does work, gives a face to donation.

If you have a fear or something holding you back from being a donor, ask questions, do research. A lot of people think sick people or organ recipients don’t want people asking questions. Parents hush their kids when they ask “what’s that?” When someone is wearing a mask. This couldn’t be further from the truth. It’s been my experience that 99% of people want you to ask. I love when people ask, I encourage them to ask anything. Even if they think it’s dumb, I don’t. The more awareness I can bring, the better.