Columns

After my double-lung transplant six years ago, I struggled to exercise. I was breathless and had symptoms of hypoxia, or low oxygen, which didn’t make sense given that I’d just had my cystic fibrosis lungs removed. Tests showed that my new lungs were healthy, so why couldn’t…

As the dust swirled nearby, I adjusted my daughter’s mask. We were in the middle of nowhere, off-roading to a mining ghost town with no cell service. The scenery was gorgeous, yet I began to second guess my decision. Was I putting her at risk for a day of adventure?…

Disabilities typically don’t go hand in hand with celebrations. In fact, messages from the able-bodied have told me my whole life that I should hide the part of me that’s significantly affected who I am today: my disability. As we celebrate Disability Pride Month, I’d like to explain how…

Recently, we went on a trip with my husband’s family to Maui, Hawaii. The trip came after a particularly stressful two months of being displaced from our home. I was looking forward to relaxing and unplugging. But I was most excited about how our daughter with cystic fibrosis (CF),…

During the COVID-19 pandemic, I took up gardening as a hobby. Since I was high-risk for catching the virus because of my cystic fibrosis (CF) and a suppressed immune system from my double-lung transplant, I spent the time isolated. That proved to be the fertile soil to grow…

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…