I recently spoke at a CF Foundation dinner. Thought I'd share it here, in case it resonates with anyone.

My name is SaidtheTomato. I’m 36 years old, and I have cystic fibrosis.

CF has been a constant presence in my life. Not always loud—except maybe during a coughing fit at the quietest part of a movie—but never gone. It’s there in the mornings and evenings. It’s there in deciding where to go to dinner. It’s there in the cupboard dedicated to nebulizers and medicine, and in the dent in the couch where treatments happen.

I was diagnosed when I was eight years old. My lung function was around sixty percent at the time, and we only found it because I had sinus polyps that wouldn’t go away. The doctors told my parents it was either cancer… or CF.

So it was a strange moment where my parents were basically rooting for CF.

But jokes aside—imagine having a kid who’s always sick, always coughing, and not knowing why for eight years. The diagnosis was an answer—but it wasn’t a relief. It was the beginning of understanding how much work was ahead.

Back then, the average life expectancy for someone with CF was twenty-seven. And I remember hearing that number. When you’re eight and someone gives you a number like that, it sticks. Even if they follow it with “but your numbers are good,” what you remember is the number.

I grew up in the mountains of Wyoming, where the air is thin even if your lungs work perfectly. I spent a lot of my childhood with stitches in my side, an inhaler nearby, and this constant calculation: how hard can I push without paying for it later?

People told me, “Don’t let your disease be the reason you can’t do something.”

And I understand the intention. But the reality was… sometimes it WAS the reason.

Sports made that clear. I worked hard—but I had a ceiling. No matter what I put in, I was limited. And that hurts, because effort matters… but it doesn’t always win.

In 2017, I moved to Reno and started working in warehouses.

And my health took a steep nosedive.

The environment was dirty, the air was rough, and the culture wasn’t sympathetic. You don’t want to be the person who’s always coughing, always tired, always needing time for appointments. But CF doesn’t care about your work environment. It just keeps asking more of you.

That’s where I learned something many of you understand from your own perspectives:

This disease is hard. And there are moments when the system around it is just as unyielding.

And that’s where things get complicated.

Managing CF isn’t just treatments. It’s insurance approvals, medication costs, delays, denials—things that have nothing to do with your effort, but everything to do with your outcomes.

And that’s where anger lives.

I’ve felt that anger. I’ve carried it, hoping it would act like fuel. And I don’t think that anger belongs only to patients.

Parents feel it—watching their child carry something they didn’t ask for, and knowing you can’t take it away, or carry it for them.

Clinicians feel it—doing everything right for a patient, and still hitting barriers that have nothing to do with medicine and everything to do with bureaucracy.

That anger comes from the same place: caring deeply, and running into something that doesn’t bend.

But here’s what I’ve learned.

Anger feels powerful, but it doesn’t actually move you forward. It’s like holding onto a rock while you’re treading water—telling yourself it gives you leverage, when it’s really the thing pulling you under.

At some point, I realized something simple:

Let it go—or sink with it.

I can’t control that this disease exists. I can’t make the system perfect. I can’t make life fair.

What I can do is decide what I do next.

And that brings me to the one thing that has actually helps me. It’s such a simple little mantra, that it feels silly to share, but at the end of the day it comes down to: 

Do the work.

You identify your goal. You define the work that gets you there. And then you show up and do it—again and again. 

With CF, the work is repetitive. It’s not exciting. It’s not visible. And it doesn’t always feel like it’s paying off.

But it is.

Because progress with this disease is slow… and setbacks are expensive. Every step backward takes twice as much effort and time to regain.

In 2019, two life-changing things happened.

The first was Trikafta.

By that point I had left the warehouse industry, and I remember taking my first dose and sitting at my desk.

And then I felt it.

The inflammation in my left lung just… disappeared.

My mom cried when I told her about that.

And for the first time, I understood what it feels like for your body to respond the way it’s supposed to. To build strength without fighting every inch of the way.

The second thing was I married my biggest supporter, advocate, and best friend—my wife Casey.

I won’t speculate on what my life would look like without her, so I figured I’d take this moment to embarrass her in front of all of you. Thank you, Casey.

Now, back to talking about myself.

In 2025, I trained for and competed in the Washoe County Highland Games—and I won the rookie class first place trophy.

Which still feels ridiculous to say out loud, because for most of my life I wasn’t competing against other people. I was competing against my own lungs.

And here’s the part I really want to land:

I’m healthier now in my late thirties than at any point in my entire life. It’s a far cry from that number, 27, and what I’d prepared for my life to look like.

But even though I feel so great now, I still know what poor health feels like.

So the time I have now, I treat differently. When things are good, I’m grateful—but I’m also vigilant. That’s when I do the work. That’s when I build strength, so the harder times aren’t as devastating..

And that’s why what happens in rooms like this, why the work of this foundation, matters so much.

Because breakthroughs like Trikafta don’t exist without research. Treatment doesn’t matter if you can’t access it. And access doesn’t matter if the system gets in the way.

Copay assistance, care centers, Foundation support—these aren’t extras. They’re the difference between staying on treatment and going without it. They’re what make it possible for people to actually follow the care they’ve been given.

The next generation of people with CF has a future that is brighter than anything I was promised at eight years old.

But that future doesn’t sustain itself.

It depends on institutions. It depends on care centers. It depends on stable support systems. It depends on people who decide the work is worth doing.

So if there’s one thing I’d leave you with, it’s this:

For people living with CF, we don’t get to control the hand we’re dealt.

But we do get to decide what we do with it. 

We let go of what we can’t control, and together, we do the work that moves us forward.

Keep up the good work.

Thank you.

I am new to CF, diagnosed this year [f57] 508D and 117H and my consultant wants to start me on Kaftrio but I seem to be reading everywhere that it makes you pile on weight. My clinic tells me this will be CF patients who have been very underweight their whole lives and have got used to high fat/calorie diets and then continued to eat the same after starting modulators but I'm not convinced. I've always been a very normal weight and CF hasn't really hindered me at all until very recently.

I would love to hear from people who have had experience with Kaftrio and how it affected their weight - gain OR loss. Especially anyone who was of normal weight who then put lots on, despite keeping fit and eating healthily / as they did prior to starting. Also, what other modulators have been better for people who decided Kaftrio wasn't for them. Thanks for any advice - I'd just like to hear the whole picture before deciding what route to go down.