The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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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.
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Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
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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.
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The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.
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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.”
