Born in 1987, growing up with cystic fibrosis… the future was a strange concept.

Not because I didn’t dream about it. Not because I didn’t want it. Not because every movie or TV show I watched demonstrated what my future could look like. But because for most of my life, I was quietly taught not to assume I would have one. I grew up thinking a future wasn’t attainable. 

For decades, the average life expectancy for people with CF hovered somewhere in childhood, then adolescence, then the 20s. Every few years the number crept up a little more. But even as treatments improved, I still carried an unspoken understanding: my life might be shorter, so plan accordingly. Which is another way of saying… I didn’t really plan for something like retirement.

Growing up, financial advice always seemed built for someone else. People talked about putting money into their 401(k) accounts, saving for when they are 65 and retired, and even looking for amazing jobs with pensions. But for someone living with a progressive, life-shortening illness, those milestones felt abstract. Retirement planning felt like saving for a vacation on a planet I would never visit. Magical, like Disneyland or those wonderful places people travel to on their Make-A-Wish vacations. 

Instead, I planned differently. I planned for treatments, hospital stays, and insurance battles. I planned to make memories while I could. “Live in the moment; it’s all I was promised,” was my life’s motto and still is. I tried to balance living responsibly with living fully, knowing my time might be limited. 

Then something incredible happened… it’s amazing but also scary. Science showed up.

Over the past several years, breakthrough therapies — particularly CFTR modulators — have dramatically changed the landscape for people with CF. For the first time in history, large numbers of people with CF are not just surviving longer; they’re living fuller, healthier lives well into adulthood. I am almost 39 years old now, and even this is an age I never expected to reach! 

And yet, with that success comes a strange, unexpected realization — I might need to plan for old age. This is a wonderful “problem” to have, but it’s still a problem.

For most of my life, 40 was my stretch goal. But now I’m realizing that 60, 70, or even older might now be possible. Suddenly, the financial assumptions I built my life around no longer make sense.

I’m sure many people can relate to this. Prioritizing experiences over savings. Medical costs eating into one’s ability to save. Choosing careers with flexibility instead of long-term financial growth. Assuming retirement planning doesn’t apply to you. But now… now it does. 

There’s an emotional adjustment that comes with this shift that people outside the CF community don’t always see. When life expectancy increases, it’s not just a statistic — it changes the entire framework of how you view your life. I began to ask questions like: 

• What does long-term financial security look like for me?
• How do I save for retirement while still managing high healthcare costs?
• What happens if treatments change again?
• What if I outlive the timeline I once planned for? 

To me, this is both exciting and unsettling. Planning for retirement used to feel unrealistic. Now it feels like an act of optimism.

Throughout all of this, my biggest supporter was my spouse. He and I got married in 2016, before modulators were in place. He was with me as I started a modulator and watched my lung function change, and hospitalizations and lung infections decrease. And he is currently with me as we navigate financial decisions together. We could grow older together and retire!? It still feels like a dream. 

Opening a retirement account isn’t just a financial decision; it’s a statement. It says, “I believe I might be here long enough to need this.” That belief alone represents decades of progress in medicine, research, advocacy, and community support.

It represents the thousands of people who were taken from us too soon. The people who fought for better treatments. The scientists who refused to accept the status quo. The families who raised money, pushed for research, and demanded more for the next generation.

Because of them, many of us now face a future we never quite expected. Planning for that future doesn’t mean abandoning the perspective CF gave us. If anything, living with a life-limiting illness teaches us something many people only learn much later: time and life is precious.

The goal isn’t to stop living in the present. It’s to live in the present while finally believing there might be a future worth preparing for.

That might mean starting small — contributing to a retirement account; bringing a family member, spouse, or trusted friend with you when you meet with a financial institution and hear words you barely understand; learning about financial planning; or simply allowing yourself to imagine your own life decades from now.

It might mean redefining what “retirement” even looks like for someone managing a chronic illness. Maybe it’s about flexibility, security, and access to healthcare rather than traditional ideas of leaving work entirely.

And it might mean giving yourself permission to feel both gratitude and confusion about it all.

Because let’s be honest… no one teaches you how to plan for a future you weren’t sure you’d have. But here I am. Here we are. Living longer. Dreaming further ahead. Opening retirement accounts we once thought we’d never need. It’s strange. It’s complicated. It’s hopeful. And honestly…  It’s one of the best problems CF has ever given me! 

Interested in sharing your story? The CF Community Blog wants to hear from you.