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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.

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.

As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.

I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”

As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient. 

Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy. 

When I started coughing up blood, letting my care team know helped me handle it the next time.