Columns

In this column, I want to share the story of a friend who needs a triple-organ transplant: lungs, liver, and kidneys. Before I delve into his experience, I’d like to provide some context about me. I have cystic fibrosis (CF), and through my writing, I was offered a position as…

I am one of the 10 percent. The 10 percent cannot take the new, groundbreaking medication that will hopefully help cystic fibrosis (CF) patients for years to come. Some people cannot benefit from Trikafta (elexacaftor/tezacaftor/ivacaftor) because they recently had a transplant. For others, like me and anomalous genotypes, Trikafta…

I learned long ago not to expect everyone to agree with me. I also realized that disagreement isn’t inherently wrong. From a young age, I was told that I should become a lawyer because I’ve always loved to engage in discussions. In retrospect, those comments might not have been complimentary,…

I miss someone. I don’t even know her … and yet I miss her. I miss the person I do not see on TV, in the movies, or portrayed in most media to date. She needs to be here. And I want to write her. The person I’m referencing is…

Loureen and I waited for our travel buddies to pass through airport security. Soon, we would be on a plane to Jordan, where we would provide various forms of support to Syrian refugees escaping civil war. Loureen, wise and a smidge or two older than me, looked me up and…

Today I had a meltdown. I don’t like to think of myself as someone who has “meltdowns,” but lately they are happening more and more. It started logically; I was feeling the familiar pains of pseudo-pancreatitis — the pale-poop, swollen-belly, mystery nuisance — which usually means I can’t eat.

Six months ago, if I had been tied to a very uncomfortable chair and tortured for weeks while interrogators screamed, “What is your greatest fear?” the only things I could have come up with would have been maybe … centipedes. Or dying in a hospital bed. Or maybe that the…

Two weeks ago, I watched a livestream of the North American Cystic Fibrosis Conference (NACFC) as I popped Trikafta (elexacaftor/tezacaftor/ivacaftor) tablets out of their blister pack. Francis Collins, one of the researchers who discovered the cystic fibrosis transmembrane conductance regulator (CFTR) gene, was singing to an audience of…

I don’t write much about my work at Bionews Services, which publishes Cystic Fibrosis News Today. I guess doing so seems a bit awkward since I’m a senior director at the company. In my gig, I head the columns division, which publishes patient and caregiver voices across dozens of rare…

I’m writing this column on the day I start treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), a new cystic fibrosis (CF) medication that I believe will be regarded as an inflection point in CF history. If you’re involved in the CF community or have been on social media in recent weeks,…