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.
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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.
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.
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.
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 learned over the years to speak up and ask questions when it comes to my cystic fibrosis care.
Calling an inpatient stay “ideal” may sound like an oxymoron, but having the things I need to be in better health by the time I head home from a hospital stay is important.
Stress, lack of sleep, and constant interruptions make spending time in the hospital physically and emotionally exhausting. But for me, it's just as difficult to come home from a hospital stay and get back to “real life.”