A New Normal: Life at 25 With Cystic Fibrosis

(CBS) — As I started my third week of IV antibiotics, I was tired 24/7. I coughed all night long and barely slept. Every bite of food was a struggle to keep down.


I began to worry that the medicines that have always done me right were beginning to lose effectiveness. I started to flash back to the moment I first heard my doctor mention the phrase “end stage” and I knew my life was about to change forever.

I was immediately taken back to watching a delivery man fill my hallway with oxygen tanks. He showed me how to use my oxygen concentrator and explained how to check my oxygen levels.

I started once again to notice the familiar dark blue hue that fills my lips when the oxygen in my body is too low.

I was scared.

Getting sicker doesn’t always happen gradually. It can hit you out of nowhere and leave your head spinning. It can happen in the blink of an eye.

Last July, I spent a week road tripping halfway across the country and Canada. I had no idea that from the time I got back until now I would spend three months and two weeks inpatient, with three surgeries, and three weeks on home IVs.

It feels like the new normal.

I continued my week of IVs and added in extra breathing treatments. I started covering the lack of food I was ingesting with extra tube feedings, a formula high in calories and nutrients. I connect to a small button like tube in my stomach and it slowly feeds me while I sleep overnight.

I did everything I possibly could and now I feel a little better, to the relief of all my friends and family who have watched me struggle this past month.

At 25 years old, I’m not a girl who is content to lay in bed. I’m not a girl who passes up a chance to go out with my friends. So I’ve stubbornly managed a few movies, an improv show starring my wonderful childhood friend, dinners, and a perfect Valentine’s day with my family and the people and puppy I love most in this world.

I couldn’t bear missing out on any more life.

I’ve rescheduled my sinus surgery for March dues to some insurance issues and have many, many appointments before then. I’m excited to get some relief.

Having more problems than normal makes me feel like maybe I’m complaining. My Facebook statuses and updates have been more about my stress over my medical equipment breaking or how I’m having trouble getting the medicines I need.

I’ve said it before and I’ll say it again: I have cystic fibrosis, but it doesn’t have me. It never will.

I’ll fight this tooth and nail and I WILL come out on top.

Next week’s goal? Get the old me back. Get those workouts going again.

Breathe in and breathe out and know that I can beat this.

CF puts up a hell of a fight, but with my determination and all the encouraging people I have in my corner, it doesn’t stand a chance. Challenge officially accepted.