"My Trikafta Story" by Carole Wright

“When you arise in the morning, think of what a precious privilege it is to be alive - to breathe.” ~ Marcus Aurelius

November 12, 2021: The Night Everything Changed

I was diagnosed with cystic fibrosis as a baby. I don’t remember a life without it. The routines, the treatments, the quiet calculations behind every plan. It has always been there, shaping how I move through the world, how I measure time, and how I understand the future. 

By 2021, that future felt like it was narrowing.

My lung function had dropped to 37% and was continuing to decline. My CF doctor and I had started talking about the transplant journey - what it would look like, and what it would require. It wasn’t abstract anymore. It was real. Necessary. And looming.

Then came whispers of something new. A drug people were calling a “miracle.”

Trikafta.

I remember the first time I heard about it. The cautious hope, the disbelief, the surge of emotion I didn’t quite know where to place. People like me don’t grow up expecting miracles. We learn to be practical. Realistic. Grateful for incremental gains.

Always hopeful.

But this felt different.

Still, I didn’t let myself fully believe it until November 12, 2021.

That day is etched into me.

The delivery was supposed to come in the afternoon. It didn’t. Hours passed. Every sound outside made my heart jump. I tried to distract myself, but the waiting was unbearable - the kind of waiting where everything feels like it’s hanging in the balance.

By 9 PM, I was exhausted from anticipation.

And then the doorbell rang.

My heart started racing so fast I thought I might throw up. That says something.

The delivery driver stood there holding a box that, to him, was just another package. But to me, it was everything. I remember telling him what was inside. His reaction was a mix of surprise and curiosity, something almost reverent. It made the moment feel even more real.

Inside, Kelly was with me. My sister Angel was on video chat. We weren’t about to let this moment pass quietly.

I opened the box.
Held the pill.
Paused.

And then I took it.

And just like that, a wave of emotion hit me all over again.

There were a lot of tears - the kind that come from carrying something heavy for so long and suddenly feeling, even just for a moment, like you might be able to set it down. I’m certain Kelly and my sister felt it too.

What happened next still feels surreal.

Within a single day, I could feel a difference in my breathing.

Twenty-four hours. 

After a lifetime of fighting for every bit of lung function, something shifted almost immediately. It wasn’t subtle.

It was undeniable.

Four years later, I can say this: it hasn’t been perfect. There have been ups and downs. Adjustments. Real life layered on top of a complex disease.

But it has changed everything.

Before Trikafta, stability wasn’t a word I would ever have used to describe my life with CF. It’s a progressive disease, after all. You’re always bracing for the next decline, the next infection, the next loss of ground.

Now?

I have stability. It’s the best word I can use to describe it.

I walk the dogs.
I travel with less worry, and more energy to actually enjoy it.
I breathe easier.
I have more energy and not just physically, but emotionally.

And that constant, quiet cloud that used to sit in the background - the one that reminded me, every day, that time might be shorter than I hoped - it’s lighter now.

Not gone. But lighter.

Living with cystic fibrosis changes you. It teaches you not to take a single breath for granted. It sharpens your awareness of what matters and what doesn’t. It strips away the unnecessary and leaves you with something more honest, more grounded.

You learn to appreciate the small things. The ordinary moments that, to someone else, might seem forgettable.

Climbing a staircase without stopping to catch my breath.
A simple walk.
A deep breath.
A day without thinking about your lungs.

These are not small things to me.

They never were. But now, I get to experience more of them.

If you had told me years ago that I would be here at 51, writing this, talking about stability, I wouldn’t have believed you.

Not because I lacked hope. Hope is something that has always lived deep inside me -steady, stubborn, and unwavering, even on the hardest days. I carry it with me always, quite literally. It’s etched into my arm: “Espoir.” A permanent reminder, in my lowest moments, that there is always something to hold onto.

What Trikafta Has Taught Me

Trikafta didn’t just change how I breathe, it changed how I live.

It’s made me more mindful of how I spend my time and who I spend it with. I don’t rush through things the same way anymore. I notice more. I feel more present.

I’ve become calmer. More grounded.

I stop more often now to take things in, to appreciate where I am, to really feel the moment instead of moving past it.

To stop and smell the roses, as simple as that sounds.

Because for so long, life felt like something I had to keep up with or fight to hold onto.

Now, I get to be in it.

Trikafta didn’t just extend my life.

It gave me space inside it.

And that’s something I will never take for granted.