Columns

My husband, Chris, and I celebrated two years of marriage on May 25, but it feels like we’ve been together longer, given all that we’ve been through this year, which saw way more sickness than health. As I reflect on the past year, I’m so grateful for my husband, who…

Fifty years ago, a cystic fibrosis (CF) diagnosis meant something very specific: a short life, mostly counted in hospital stays and loss. Parents received the diagnosis and were quietly told not to plan far ahead. There was no genetic map, no targeted therapy, and no database of mutations. Back…

I recently underwent surgery to clear up a sinus infection. Even though I had a double-lung transplant eight years ago, cystic fibrosis (CF) still often results in thick, sticky mucus clogging up my sinuses and becoming a breeding ground for germs. I’ve lost track of how many sinus…

When my late daughter, Jasmine, was diagnosed with cystic fibrosis in 1994, we had appointments to remember, medications to track, and other treatments that seemed to eat up every spare moment. I remember sitting at the kitchen table surrounded by prescription bottles and sticky notes, wondering how I would…

Cystic fibrosis (CF) can manifest in countless ways, and no two experiences look exactly the same. For me, one of the most disruptive symptoms isn’t something that shows up on a pulmonary function test. It’s anxiety. I’ve had respiratory infections and enough IV antibiotics for a…

I learned early on in my life with cystic fibrosis (CF) that coping with a chronic illness is all about the long game. Prior to my double-lung transplant eight years ago, I had to learn how to deal with a lot of uncertainty. Wrestling with matters of life…

Last in a series. Read part one. Last week, I asked why those with cystic fibrosis (CF), a progressive and incurable genetic disease, must keep proving disability after already qualifying. This is especially frustrating after reaching an advanced disease stage and undergoing a life-extending double-lung transplant, as I…

Cystic fibrosis (CF) tends to take up a lot of space in my life. Sometimes it’s so all-consuming that I don’t get to focus on anything else, and I must wrestle to separate my identity from this label that I never chose. But CF is not my whole life…

My column, “Mutations & Conversations,” was first launched in 2018 after I observed Cystic Fibrosis Awareness Month by writing a blog post every day in May about living with cystic fibrosis (CF). This decision to write this series was made in the midst of grief: My sister,…

First in a series. There is no cure for cystic fibrosis (CF). This is not a controversial statement. It is not debated in the medical literature or disputed in transplant centers. Everyone in this community knows it in their bones. I say that literally, as CF-related bone disease…