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.
Site Search
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
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.
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.
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.
My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.