Columns

Something specific to the cystic fibrosis (CF) world is how we talk and the words we say. After living with CF my whole life, I’ve gained insight into our speech compared with that of the able-bodied world. That awareness dramatically grew after my double-lung transplant seven years…

It feels surreal that I had a double-lung transplant seven years ago. The season of life leading up to my transplant is still present in my mind as I reflect on what I went through physically and emotionally. Going through the transplant process was traumatic. Today, I continue to…

In the next two weeks, my goal is to raise thousands of dollars for the Cystic Fibrosis Foundation. I’ll hike 17 miles and host a Pilates fundraiser to try to reach this amount. These commitments are atop my already jam-packed schedule filled with school drop-offs and pickups, after-school activities,…

Note: This column describes the author’s own experiences with a continuous glucose monitoring device. Not everyone will have the same response. Consult your doctor before using any new medical device. Cystic fibrosis (CF) is largely known as a respiratory disease. It primarily affects the lungs and digestive system,…

Last weekend, I was at my local pharmacy buying birthday cards when I remembered that I needed to pick up the insulin refill my endocrinologist had ordered the day before. After giving the cashier my name and date of birth, I paid $3 for my monthly insulin pack, which I…

Living with cystic fibrosis (CF) and having a double-lung transplant six years ago has naturally solicited some internal rumbling regarding my own mortality. When I joined the chronic illness community a decade ago, I didn’t expect that the friends I had made would die so soon.

Most days when I start my computer, I barely glance at my home page before shutting it down. But the other day, an article title about a “glass child” caught my eye. Something was telling me to read the article. Upon reading, I learned that the term “glass child,”…

I’ve been trying to write more. I promise. But my tacrolimus dose is pretty up there, and it’s getting on my nerves. Literally. Nerve pain from the medication, an immunosuppressant used in lung transplant management, has me feeling like I’m driving diabetes lancets into my fingers with every…

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…