Living Beyond - a Column by Jennifer Bleecher

One month ago, my daughter got married. I woke up early that morning and took a long, slow, deep breath. For someone who has lived with cystic fibrosis (CF), that simple act felt like a miracle. But the real miracle was still ahead — walking my daughter down the…

In my life with cystic fibrosis (CF), the antibiotic tobramycin has saved my life countless times. But 15 years ago, it took something from me that I’ll never get back. Toxicity from the drug permanently destroyed the tiny hair cells in my inner ear, leaving me with vestibular…

Living with cystic fibrosis (CF) and a double-lung transplant often feels like inhabiting two worlds simultaneously. There’s the extraordinary world, filled with medical miracles, precisely managed medications, and a body that has defied more statistics than I care to count. Then there’s the ordinary world, where sometimes all I…

At 54 years old, and five years after my double-lung transplant, I feel September’s arrival differently than most do. I don’t just notice Pennsylvania’s crisp air or the dry leaves crunching underfoot. The month carries a weight that goes beyond seasonal change for people like me who are living with…

This Labor Day weekend marks five years since I received the gift of a double-lung transplant. Actually, it happened on Sept. 5, 2020, but that was the Saturday before Labor Day that year, so I tend to equate the holiday with my surgery. I’m writing this column as my…

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…

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…