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.
There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.
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.
The only thing that is certain in my life is the uncertainty of my teenage daughter's next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
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.
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'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.
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.