Living Beyond - a Column by Jennifer Cogliano

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…

At 54, I’ve lived with cystic fibrosis (CF) all my life. Five years ago, I survived a double-lung transplant. Along the way, I’ve managed CF-related diabetes (CFRD) and spent nearly two decades facing stage 3 chronic kidney disease. I’ve lost one kidney and rely on the remaining one. It…

Five and a half years ago, I woke up from a double-lung transplant breathing as I hadn’t been able to in decades. Not just the volume or ease of it, but the absence of the fight that I’d become used to with cystic fibrosis (CF). The lungs just worked.

Five and a half years ago, I received the gift of a lifetime: a double-lung transplant that gave me back my breath and, in many ways, my life. After decades of fighting cystic fibrosis (CF), I finally felt free. And then reality set in. Nobody tells you that a…