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.
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A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.
Living with cystic fibrosis, I owe gratitude to the friends, family, and care team members who love me, support me, and make my life easier. Join me in letting those who support you know how much you appreciate them.
Even though nobody close to me had cystic fibrosis, I decided to try to make a difference in the lives of people with CF.
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.
After I was diagnosed with cystic fibrosis at the age of 21, I was eventually able to find a way to involve myself in the CF community by doing something I loved -- golfing. Along the way, I met some incredible people who showed me the importance of chasing the moment.
CF Knocked the Shyness Out of Me
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.