Columns

I learned last week that my pediatric cystic fibrosis (CF) physician had recently passed away. I say pediatric physician, but I was under his care from birth to age 44. I’m now 53. As I reflect on my experiences with him, I realize the CF patient-doctor relationship is unique…

The divers are synchronizing, the skateboarders are grinding, the gymnasts are flying through the air, and like so many others across the world, I’m sitting firmly in front of my TV, taking in all the spectacular feats of human capability. Growing up, I remember going to the clinic every three…

As an adult with cystic fibrosis (CF), I’m part of the majority within the CF community. Whereas this disease was once seen as a childhood illness, scientific advancements have allowed us to grow up, get older, and adjust to a life we didn’t foresee 10 or 15 years…

Cystic fibrosis (CF) is a complex disease that affects each of us differently. However, many outside factors impact our lives in ways healthy people often don’t realize. In this column, I want to spread awareness of one of the many challenges and stressors involved in living with CF:…

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.