Columns

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…

Nearly eight years ago, I flew to Salt Lake City for the Transplant Games of America (TGA). It was one of the best decisions I’ve ever made. Life-changing, in fact. It had been almost a year since my double-lung transplant due to cystic fibrosis (CF). That first year…

When my late daughter, Jasmine, who had cystic fibrosis, turned 10 in 2001, she had lived through a year of medical routines and hospitalizations. But there were also moments of unexpected joy. For her birthday, she wanted a unicorn cake, so we attempted to make one together. With our…

Counseling is as routine for me as eating. Being born with cystic fibrosis and receiving a double-lung transplant led to recurring mental health struggles, including anxiety and depression, which require continual management. Therapy is one of the tools I use to respond. I began my college years as a young,…

Every morning used to start the same way. My late daughter, Jasmine, would shuffle into the kitchen with wild-looking hair, rub the sleep from her eyes, and ask for applesauce with cinnamon. Before she could eat, though, she’d have to do her cystic fibrosis treatment regimen, which consisted of…

“Why do you keep talking about what you’ve been through?” Yes, I’ve actually been asked this before. No, I won’t stop talking about what I’ve lived through. It’s not for my own sake, but because people continue reaching out to me to say that sharing my story helps them feel…

During the summer of 2001, when my late daughter, Jasmine, was 9, she required a two-week hospital stay due to an acute pulmonary exacerbation — a complication of her cystic fibrosis (CF). Life was never the same after that. When I finally brought her home, the relief was…

Five years ago, I got the call. If you’re in the cystic fibrosis (CF) community and have had a double-lung transplant, you know the weight of those words. You know how the terror and the relief collapse into a single moment after you hang up the phone. You…

Prior to my double-lung transplant eight years ago, I didn’t know anything about organ donation. While living with cystic fibrosis (CF), I hadn’t connected with others who had CF, either. I started to dip my toes in these spaces as I approached the transplant evaluation process, finding comfort in…