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I am a mother who has cystic fibrosis (CF). My daughter is 30, but she was 15 when my lung function started its long, uneven slide. She has spent more than half her life watching my body negotiate with CF. She has seen the hospital calls, the bad lab…

I’m just back from taking part in the Transplant Games of America, where 966 transplant recipients and living donors gathered in Denver to make history. The event saw the most organ transplant recipients and living donors gathered in one place, meaning we made the Guinness Book of World Records!…

“Why are you so tired? You don’t even do anything.” Cue all the puzzled facial expressions. Prior to my double-lung transplant eight years ago, I slowed down a lot. As my cystic fibrosis (CF) lung disease continued to progress rapidly, my energy levels and ability to function outside…

By the time my late daughter, Jasmine, had turned 11, we’d become professionals at handling cystic fibrosis (CF). In those years, our lives revolved around a schedule that most people couldn’t imagine. CF is a genetic disease that causes the mucus in the body to become thick and sticky,…

Living with cystic fibrosis (CF) means becoming an expert in your own body. You learn the rhythms of your lungs and the early warnings of an exacerbation. You notice the subtle signs that something is shifting. Even after a lifetime of navigating CF, a double-lung transplant taught me something…

“Can you help me?” It seems like a simple request, but it’s not so easy for me to say those words. I feel guilty asking for help and ashamed that I need assistance. Living with cystic fibrosis can make me feel like a burden because of my health…

Sometimes a story finds you and simply won’t let go. That’s what happened when I came across More Mornings 4 Mexico on social media. This program in Mexico City for children and young adults with cystic fibrosis (CF) is producing results I found hard to believe at first. It’s…

I’ve been anxious since the removal of my beloved port-a-cath. Living with cystic fibrosis has frequently necessitated the use of intravenous antibiotics. A few years prior to my double-lung transplant in 2017, I needed IVs every few weeks. But my veins grew tired, so I had a…

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…