My CF story goes a little something like this…
Finding Out We Have CF
My oldest brother was born extremely sick and no one at the local hospital could figure out why. When my parents realized something was seriously wrong, they took him to Pittsburgh Children’s hospital where he was diagnosed with Cystic Fibrosis. He most likely would have died if my parents listened to the local doctors who basically said he was fine.
My other older brother was the lucky one who was born perfectly healthy, and then I was diagnosed with CF as soon as I was born, since they knew to look for it.
Growing up I was extremely healthy and really couldn’t even tell that anything was “wrong” with me. I took dance lessons, gymnastics, played softball and basketball, ran around with the other kids and even joined the swim team in high school with no problem.
CF Actually Making Itself Known
My first hospitalization didn’t even happen until my junior year of high school. This is about the time I started slowing down with sports and exercise and I ended up in a car accident with the air bags going off and dust flying everywhere. I blame the combo of these two things for my first ever CF exacerbation.
I was in and out of the hospital a few other times throughout college (I went to the University of Cincinnati – Go Bearcats!) but always bounced back and still finished my degree along with a minor and another certificate within 4 years, which most healthy students can’t even figure out how to do.
After graduating, I moved from Ohio to Florida with my boyfriend at the time and enrolled in a Master’s program. I had my first hospital stay away from home, but still kept fairly healthy overall. I even started working out with a personal trainer and began to train to run a 5k with the end goal of running an ultra-marathon.
A Turn for the Worst
THEN last year happened. One day I suddenly had horrible stomach pain out of nowhere. I thought it was nothing more than a really bad stomach ache for awhile and stayed in bed for a day, until I couldn’t handle the pain anymore and asked my roommate at the time to drive me to the ER at 5a.m. A few hours later I ended up in emergency surgery for a twisted intestine and blockage.
I had complications after surgery and just couldn’t seem to bounce back. Exercising seemed nearly impossible and at first I couldn’t even get around without heavy-duty pain meds. My FEV1 dropped from 68% while I was training/running to 28% after surgery.
Since then, everything has been consumed by talk of a double lung transplant, which I’m desperately trying to avoid. My brother had his done 2 years ago and is doing FANTASTIC, but I’m just not ready to go down that road yet.
Right now I’m in the middle of a very delicate balancing game. My lung function is so low that if I get extremely sick again I may end up in trouble if I’m not listed for a transplant. But on the other hand, not many people realize that a lung transplant only gives you about 5-10 years and I’m just not ok with that. I think you people need to see my lovely face longer than that 🙂 Sometimes there’s an option of a second transplant but it gets complicated. I want my own lungs for as long as possible and I’m doing everything in my power to rescue them.