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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We asked three people in the CF community to share their favorite sessions from this year’s North American Cystic Fibrosis Conference.
We’re spotlighting six authors who have written books based on their experiences with cystic fibrosis. Check out what writing about CF has meant for them, and what they hope their readers will learn from reading their stories.
I recently was diagnosed with a type of attention deficit hyperactivity disorder, which helps explain why I sometimes didn’t keep up with daily care. By taking ADHD into account, I’m managing my cystic fibrosis better.
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.
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.
Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
I am excited that the Cystic Fibrosis Foundation has surpassed $100 million in research funding through its Infection Research Initiative and that it promises to continue to support infection research at the same rate as the past three years. I am hopeful that the patient community will hear more about funding updates for new infection research as we move forward.
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.