In my last column, I wrote about the psychological aspect of living with cystic fibrosis (CF) that I dislike the most: the focus on shortened life expectancy. This week, I want to offer more of an optimistic outlook, as I try to find balance in all things.
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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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…
In this column, I want to discuss something that’s been bothering me for a long time, so I’ll just go ahead and say it: I despise the fact that the topics of age and life expectancy are such a prominent feature of the cystic fibrosis (CF) identity. This…
So many things need to be done during the hustle and bustle of the holiday season. Gift lists need to be made, cookies need to be baked, decorations must be hung, and meals need to be planned, to name a few things. All of this can create added pressure, worry,…
Last week, I had to say goodbye to my best friend, my 11-year-old dog, Blaze. He had been battling a mast cell cancer tumor on his jaw. As pet owners know, making the decision for this final act of love is the hardest and most heartbreaking thing we have to…
The Merriam-Webster Dictionary defines identity as “the distinguishing character or personality of an individual.” Having a genetic, progressive, and life-shortening disease such as cystic fibrosis (CF) can consume a large part of a person’s physical, mental, and emotional state. It can feel that the disease becomes your identity.
We all know that exercise plays an important role in physical and mental health. But as someone with cystic fibrosis (CF), I believe that exercise is as vital as the medicines I take. When I was young, my pediatric CF physician encouraged my mom to keep me active.
They say hindsight is 20/20. Now that I’m in my 50s, I can reflect on my younger years and realize that I was trying to do too much. I was spinning all of the plates in the air and trying to fulfill every role that came my way: mother, wife,…
A long list of medical conditions can be considered invisible because others can’t see their effects. Those of us living with cystic fibrosis (CF) understand the idea well since we commonly hear “You look well!” or “You don’t look sick,” even from people who know we have the…
In 2014, when my daughter was entering her freshman year of college, I watched a segment of the TV news program “60 Minutes” that changed my life. In the segment, presenter Anderson Cooper reported on a mindfulness retreat he attended led by Jon Kabat-Zinn, often considered the…
Labor Day weekend means many things. It celebrates the achievements of the American worker while also marking the end of summer vacation and the start of a new school year. And to me, it’s the anniversary of my double-lung transplant. Three years ago on Labor Day weekend, I received…
Having two rare mutations that cause my cystic fibrosis (CF) has been a small blessing for me. It’s true that I’m unable to participate in many clinical trials that might have given me access to new medications; that’s because I don’t have a copy of the…
In 1994, I was 24 years old and engaged to be married. My health was good despite my cystic fibrosis (CF). My doctor hadn’t mentioned anything about family planning, so I decided to move forward with my life. A month before our wedding, my husband-to-be and I stopped…
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