For seven years, my Medicare prescription drug plan, Aetna’s SilverScript, has been one of the few things in my life I haven’t had to think much about. It simply worked. This fall, I learned that it will no longer be available in my state in 2027. Just like that, a…
Living Beyond
— Jennifer Cogliano
Jennifer Cogliano, diagnosed with cystic fibrosis in her first few days of life, has been defying the odds of her disease for the majority of her life. She has a daughter, worked as a nurse for 20 years, and then received the gift of life through a bilateral lung transplant in 2020 during the pandemic. Jennifer is the self-published author of a children’s picture book, “The Friendship Umbrella,” which teaches about being kind, helping others, and appreciating each other’s differences. Jennifer loves dogs and music, has a strong faith in God, and has always chosen to count her blessings instead of her struggles.
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Cystic fibrosis (CF) is different for everyone. I have two rare CF mutations, and my disease has never followed the “typical” course. But one thing I believe is true for all of us living with this disease is that we know our bodies better than anyone else. For the…
For most of my life, food was medicine. Living with cystic fibrosis (CF) and pancreatic insufficiency meant my body didn’t absorb fat the way it should. Because of that, I also didn’t properly absorb fat-soluble vitamins. From childhood, I was taught to eat more: bigger portions,…
At 55, and six years past a double-lung transplant, I sometimes catch myself marveling at how I’ve gotten this far with cystic fibrosis (CF). When I was a kid, nobody handed my family a map that stretched this far. Yet here I am, still learning how to live beyond…
There is a version of me that exists only on paper: a list of diagnoses, a string of acronyms — CF, DIOS, CFRD, CKD3, DVT — that would mean nothing to a stranger and everything to the people who share them. At 55, I negotiate with…
If you live with cystic fibrosis (CF), chances are you already know more about fall risks than most people twice your age. I certainly do, even six years after I had a double-lung transplant. When people think of CF, they usually focus only on the lungs. Most of this…
I recently had the privilege of attending a virtual experience called Spit It Out. That’s a storytelling and public speaking training series created with a Cystic Fibrosis Foundation (CFF) Impact Grant. It’s led by Katherine Russell. And this Impact Grant truly impacted me. Russell, who has cystic fibrosis (CF)…
It’s only mid-August, and already the stores are stacked with Halloween decorations. Every year, this catches me off guard, and I find myself a little annoyed by it. I’m not ready to rush through summer. I love the warmth of the sun on my skin, the feeling of fresh air…
I turned 55 this month, and I am giddy about it. Not quietly pleased. Not gracefully accepting. Giddy, the way you’re supposed to be at 21 and rarely are, because you don’t yet know what a gift a birthday can be. I know because I’ve spent almost six years breathing…
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…
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