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You’re probably aware of the proverb “It takes a village,” which highlights that having a community is necessary for accomplishing tasks or goals or advancing a cause. For people like me who have cystic fibrosis (CF), making progress with disease funding, research, and care has certainly required a village.

It’s utterly amazing to be able to breathe easily again, almost four years after having a double-lung transplant due to advanced cystic fibrosis (CF). It isn’t easy to put the enormity of the feelings into words, even now. Besides the vague discomfort from a scar that runs from…

As we bring attention to National PTSD Awareness Month this June, I want to shed light on my personal journey of recognizing the symptoms in case you’re in a similar boat. After my double-lung transplant in 2017 due to cystic fibrosis (CF), I remember feeling off but…

For days after having an anatomy scan, I spent most of the time lying on the couch, crying. My eyes were so swollen I had to ice them to keep them open. We were living every parent’s worst nightmare: Our unborn baby had ultrasound abnormalities. The fear of the…

“I’ve never run a race, but I want to,” I said to myself when I saw a registration link for the 27th annual Gift of Life Donor Dash, held last month in Philadelphia. I’m a 52-year-old with cystic fibrosis (CF), insulin-dependent cystic fibrosis-related diabetes, stage 3 chronic…

As we approach the end of Cystic Fibrosis Awareness Month, I want to share some wisdom I wish my younger self would’ve known at the start of my journey with this rare disease. Perhaps you’re in a similar situation and can relate to this advice. Dear younger me:…

Living with cystic fibrosis (CF) feels like riding on a never-ending roller coaster. There are highs and lows, unexpected pitfalls, and twists and turns around every corner. Like a roller coaster, the paroxysmal journey of CF leaves us feeling ill much of the time. But life moves forward,…

I can still remember my husband’s face when he walked through the doorway on that fateful summer day. We were awaiting his genetic carrier results during my second pregnancy. As a first responder, he never comes home early from a shift, but on that day, he was home five…

Since I was born with cystic fibrosis (CF), gaining weight has always been a challenge for me. CF doesn’t only affect the lungs; it can also cause a number of gastrointestinal (GI) issues. Because my body lacks the salt content to move fluids effectively through my system, my GI…

I nearly fell asleep in the bath the other night. It was after a particularly hard day with my daughter, Claire, who has cystic fibrosis (CF), and I was exhausted. The night had ended in screaming and tears once again. In the last few weeks, it feels like there’s…