Columns

Most days, the mental load begins before my feet hit the floor. The first thoughts of my day are rarely about coffee or schedules. I’m already running through a quiet checklist: medications and other treatments, upcoming appointments, symptoms, exposure risks, and more. I’m listening — not just hearing,…

I used to be the woman who could do it all. For more than 20 years — from my early 20s into my mid-40s — I worked as a nurse, initially on a cardiac telemetry unit, where I watched heart rhythms shift in real time to catch the small changes…

I used to think that I needed to wait until my health was perfect before I could do all the things I wanted to do. I’d say, “Once I get this surgery done … ,” or, “Once my lung function cooperates … ,” or, “When I feel better … ”…

Holidays used to sneak up on me. I’d barely notice the calendar flipping over to June. Maybe I’d see a sign in the grocery store or a rack of “World’s Best Dad” mugs by the checkout, but it never meant much. Father’s Day was just another Sunday. I was never…

I am a mother who has cystic fibrosis (CF). My daughter is 30, but she was 15 when my lung function started its long, uneven slide. She has spent more than half her life watching my body negotiate with CF. She has seen the hospital calls, the bad lab…

I’m just back from taking part in the Transplant Games of America, where 966 transplant recipients and living donors gathered in Denver to make history. The event saw the most organ transplant recipients and living donors gathered in one place, meaning we made the Guinness Book of World Records!…

“Why are you so tired? You don’t even do anything.” Cue all the puzzled facial expressions. Prior to my double-lung transplant eight years ago, I slowed down a lot. As my cystic fibrosis (CF) lung disease continued to progress rapidly, my energy levels and ability to function outside…

By the time my late daughter, Jasmine, had turned 11, we’d become professionals at handling cystic fibrosis (CF). In those years, our lives revolved around a schedule that most people couldn’t imagine. CF is a genetic disease that causes the mucus in the body to become thick and sticky,…

Living with cystic fibrosis (CF) means becoming an expert in your own body. You learn the rhythms of your lungs and the early warnings of an exacerbation. You notice the subtle signs that something is shifting. Even after a lifetime of navigating CF, a double-lung transplant taught me something…

“Can you help me?” It seems like a simple request, but it’s not so easy for me to say those words. I feel guilty asking for help and ashamed that I need assistance. Living with cystic fibrosis can make me feel like a burden because of my health…