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.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of cystic fibrosis-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
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My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.
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During COVID, it became apparent who in our lives supported the decisions we made for my wife’s health.
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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’ve had to make many changes in response to the COVID-19 pandemic to protect my health. Not all the changes were welcome, but now that I’ve adjusted, I’m enjoying my new normal.
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In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.
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What I thought was a cold turned out to be COVID. I shared my positive test result with my CF care team. Not only did they let me know of an important drug that was available to reduce the risk of getting severe symptoms, but they also helped me find it since the drug was in short supply.
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Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
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Because I am immunocompromised after having a lung transplant, I still take extra precautions with COVID-19. I still feel awkward with turning down invitations and limiting my own guest list at gatherings, but I know my closest family and friends understand and do whatever they can to accommodate me.
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Because my husband has cystic fibrosis, I take extra precautions to protect him from COVID-19 exposure. That is why I can’t continue to have relationships with friends and family who refuse to get vaccines or wear masks. They are putting my husband -- and others like him -- at risk.
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As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
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Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
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Even though I've been vaccinated against COVID-19, I've been using a risk assessment tool to try to make sure that I'm still being as safe as possible.
