Let’s make this very clear: I don’t think I need to defend myself when it comes to the decisions that I make in my life with cystic fibrosis. However, I am a firm believer in the idea that with a greater understanding of others’ experiences comes greater empathy, and finally,…
Columns
I’m flyin’ high. Or maybe flyin’ buzzed. My transplant docs say “drink only in moderation,” and I am, smuggling sips via a straw tucked into my N99 mask. It’s a pathetically tiny plastic cup of white wine, but evidently, I can’t handle much. Don’t judge. I know people…
How to Beat Brain Fog
As I sat down to write my column for this week, a massive wave of writer’s block hit me. This has been plaguing me for a while. Great timing, right?! I started five different column pieces, each of which I would get a solid start…
Surviving Home IVs As a Mom
I’m no stranger to home IV antibiotics. Actually, if I am being completely honest, I think we have gotten a little too friendly over the past decade or so. I prefer to do home IVs because I am one of those patients who goes a little nuts after being trapped…
Confession: I failed kindergarten. It was open house night and my teacher showed my parents a line of class self-portraits. There were probably some overly large heads and outlandish skin colors, but you’d be able to tell they were drawings of humans. Then my parents saw mine: a…
Before the food-splattered kitchen floors, overly enthusiastic smiles, and nursery rhymes; before babbling “dadas” or “mamas” filled our living spaces; and before the arrival of my blond-haired, blue-eyed baby-treasure, there was just me. I am a college graduate sorority girl and an eternal optimist who is constantly sipping my glass-half-full…
It starts with chemicals too small to see. Too little of this, too much of that. An imbalance. It becomes a dulled personality. A mixture of confusion and self-doubt morphing to disinterest. A void. It becomes feeling awake while asleep and feeling asleep while awake. It becomes…
The CF community is no stranger to the fact that medications that we put into our bodies, especially the powerful ones, do not come without risks. However, they are necessary evils to battle cystic fibrosis. Lately, my battle with cystic fibrosis has been riddled with these powerful,…
26 Years and Counting with CF
The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds. During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The…
I’m dead-beat. Bone-tired. Wasted. But I ain’t dead-dead and I ain’t lung-tired. And with my lung transplant, I guess you could say I’m recycled, rather than wasted. Maybe these jokes don’t make sense. I am exhausted, after all. My glasses are battered, and so are my shoes. I…
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Recent Posts
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- Trikafta helps cystic fibrosis patients reduce supportive treatments: Survey December 23, 2025
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