Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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When I decided to study abroad in 1974, I also decided that I would not allow CF to stop me from living my life to the fullest.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
My oldest son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. While we both had been waiting a long time to get an answer to what had been plaguing him, I'd been hoping and praying that he'd escape the CF sentence. The diagnosis, however, did not come as a surprise because exactly 35 days earlier, my younger son, Caleb, at 14 years, had already been diagnosed with CF.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
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.
The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.
Cystic fibrosis can't take living away, especially when one loves life!
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.