I’ll never forget my daughter’s college graduation — not because I was there cheering in the audience, but because I wasn’t. Instead of watching her walk across the stage in person, I was watching the ceremony on my phone from the intensive care unit, where I was fighting a bowel…
Living Beyond - a Column by Jennifer Cogliano
When people think of cystic fibrosis (CF), colon cancer usually isn’t the first thing that comes to mind. But for those of us living beyond what used to be the limits of this disease, it’s become an important and very real concern. Thanks to advances in treatments,…
Because I’m living with cystic fibrosis (CF), nutrition is more than just a personal choice; it’s a vital part of managing my health. With CF, malabsorption of fats and fat-soluble vitamins makes it challenging to gain and maintain weight. It also results in vitamin deficiencies. And while…
Today I turned 54. My birthday doesn’t come with a party theme or a cultural rite of passage. However, for someone with cystic fibrosis (CF) like me, it’s a quiet revolution. When I was diagnosed, the average life expectancy was 12 years old. For me, 54 isn’t just a…
I’ve always carried a heavy purse. Stay with me here. Years ago, when I was waiting for a double-lung transplant, my mom would often accompany me to my doctor appointments. She’d graciously offer to carry my bag, but almost always commented on the weight. “What the heck do you…
When I was 17, my appendix ruptured, requiring surgery. Because I had cystic fibrosis (CF), I was admitted to the pediatric CF unit. It was the late 1980s, and most CF patients were still children. Every room had two beds. While the staff tried to give us separate rooms,…
I pushed my mind and body to keep up with those of my peers in my younger years. In high school, despite having cystic fibrosis (CF), I kept up with them socially while also working a part-time job. I graduated, like most of my friends, and then went to…
We’ve been having such a slow-developing spring here in Pennsylvania. The temperatures have been lower than normal, and it feels like it’s been raining for months. I must continually remind myself not to complain about it. Yet some years, it’s felt like we’ve gone from freezing cold and snow to…
I’ve always been open about having cystic fibrosis (CF). Though I don’t include this information when introducing myself, it comes to light soon enough. That’s largely a choice, because it’s often an invisible disease, with many of us appearing physically healthy despite having it. While much of this condition…
Note: This column describes the author’s own experiences with using masks during nebulizer treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I haven’t dealt with many sinus issues in my lifetime. At age 17, I had a nasal polyp…
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