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.
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.
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
My life after a 2011 lung transplant was going along smoothly -- until chronic rejection and the wait for new lungs while hospitalized took me to my physical and emotional limits.
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.
Being hospitalized with COVID-19 was isolating, even my daughter was not allowed to visit. But, thanks to the women and men who provided my care, I was never alone.
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.