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As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.

Hospital stays are hardly a party. But since they're a part of life with CF, let's get the most out of them and help ourselves make them fewer and farther between.

A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. But through it all, I found a silver lining.

When I was young, my parents tried to increase the appeal of hospital stays by calling them “sleepovers.” But as I got older, I realized that these two things are, in fact, not the same.

When my four children were young, it was important for my husband and me to protect their sense of security. We did what we could to reduce their fears about my frequent hospital visits and even make it fun for them at times. 

Beth Evans, a 48-year-old with CF, is currently playing the lung transplantation “pre-wait waiting game.” She is sick enough to need new lungs, but not quite sick enough to get them just yet. 

Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.

I went the first 17 years of my life without being hospitalized, but CF caught up to me when I had my first “tune up” last year. As much as I thought I knew about what it would be like, I wasn't prepared for how that first hospitalization would feel.

I wrote this poem to my daughter as I watched over her in the hospital.

I've spent many Christmases in the hospital; cystic fibrosis never takes a vacation. But over the years, I found ways to fill my hospital room with holiday cheer.