Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
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 our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.