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.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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I thought my exercise capacity on continuous oxygen would decrease. Thanks to the support from others and high-intensity interval training, my exercise capacity actually increased.
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Having CF has always involved doing things nobody else around us is doing because, well, we have to — and COVID-19 won’t be any different. As a post-transplant CF patient who happens to be a practicing pharmacist, I am writing about the tools we now have in a world of limited universal restrictions and precautions.
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I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
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I never had the luxury of time to reflect on the hardships that I experienced fighting cystic fibrosis because I was too focused on that particular day’s struggle. Still, there are two experiences that have stuck with me even though they were more than 10 years ago.
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After a childhood spent running, I had largely given it up by the time I became an adult. But five years ago, it became my outlet. CF and COVID-19 temporarily sidelined me, but as long as there is air in my lungs, I won’t ever give up.
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Breastfeeding when you have CF is more complicated than it is for people who don’t have CF. Here’s what I’ve learned about it with my kids.
