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CF Community Blog

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.

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Rebecca smiling at the hospital with her care team.

BLOG

What I Didn’t Expect About Transitioning From Pediatric to Adult CF Care

My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.

Rebecca Donoho
| 5 min read
Maura-Wozniak-Hospital-Featured-Rectangle

BLOG

Making In-Person Care Center Visits a Priority Despite the Pandemic

Even though it was scary, I made attending medical appointments during the pandemic a priority.

Maura-Corcoran-Wozniak-Headshot
| 5 min read
Michelle-Herpolsheimer-Waiting-Room-Featured-Rectangle

BLOG

My Return to In-Person Clinic Visits

After several months of telehealth visits with my care team, I returned to the clinic for an in-person visit. Because of COVID-19, some aspects of the visit were different than before.

Michelle-Herpolsheimer-Headshot
| 5 min read
Jacqui-Sjoberg-Selfie-Featured-Rectangle

BLOG

What I’ve Learned From 11 CF Care Centers in 21 Years

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.

Jacqui-Sjoberg-Headshot-Updated
| 5 min read
Lydia-Sand-Telehealth-Featured-Rectangle

BLOG

My Experience With Telehealth

COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.

Lydia-Sand-Headshot
| 3 min read
Creating-a-Smooth-Transition-to-Transplant-Clinic-Featured-Image-rectangle

BLOG

Creating a Smooth Transition to Transplant Clinic

Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.

Paul-Merritt-Headshot
| 5 min read