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.
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.
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.
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.
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.
Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.