Living Beyond - a Column by Jennifer Cogliano

Music has always spoken to me. I don’t remember a version of myself that didn’t have a song for whatever I was feeling. Before I had words for grief, I had a melody that held it for me. Before I could explain fear to a doctor, or anger to my…

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 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…

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…

Sometimes a story finds you and simply won’t let go. That’s what happened when I came across More Mornings 4 Mexico on social media. This program in Mexico City for children and young adults with cystic fibrosis (CF) is producing results I found hard to believe at first. It’s…

Fifty years ago, a cystic fibrosis (CF) diagnosis meant something very specific: a short life, mostly counted in hospital stays and loss. Parents received the diagnosis and were quietly told not to plan far ahead. There was no genetic map, no targeted therapy, and no database of mutations. Back…

Last in a series. Read part one. Last week, I asked why those with cystic fibrosis (CF), a progressive and incurable genetic disease, must keep proving disability after already qualifying. This is especially frustrating after reaching an advanced disease stage and undergoing a life-extending double-lung transplant, as I…

First in a series. There is no cure for cystic fibrosis (CF). This is not a controversial statement. It is not debated in the medical literature or disputed in transplant centers. Everyone in this community knows it in their bones. I say that literally, as CF-related bone disease…

Five years ago, I got the call. If you’re in the cystic fibrosis (CF) community and have had a double-lung transplant, you know the weight of those words. You know how the terror and the relief collapse into a single moment after you hang up the phone. You…

When my daughter started elementary school, I wasn’t looking for help. I was just another mom on the sidelines of a soccer field, handing out snacks at birthday parties, and setting up carpool schedules. But in the routine of those early school years, something special grew — a community I…