I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
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Managing cystic fibrosis can feel overwhelming at times — but we’re here to help. Learn how to navigate life with CF.
As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.
Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn't alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn't mean that I wasn't grateful for all Trikafta has done for me.
In the summer months, some things require special attention for people with cystic fibrosis.
Traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.
The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.
A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.