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.
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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.
My feisty, athletic nature has gotten me through two double-lung transplants. Although my active lifestyle is different than before, I have embraced brand-new competitive pursuits that have helped me develop the mental fortitude to overcome medical adversity.
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.
It took me 38 years to find a fitness program to stick to. And since I started TrikaftaTM, I am even running for the first time in my life -- and almost enjoying it!
Growing up with cystic fibrosis made me feel different and like I had a lot to overcome. The road that led me to my own personal training business showed me that CF has shaped me in good ways.
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 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.