In life with CF and transplant, it’s important to find joy wherever we can

There is a version of me that exists only on paper: a list of diagnoses, a string of acronyms — CF, DIOS, CFRD, CKD3, DVT — that would mean nothing to a stranger and everything to the people who share them.

At 55, I negotiate with joint pain every morning before getting out of bed, which determines what kind of day I’m going to have. Infection control never stops.

Six years ago, I received two new lungs and, with them, a second chance written in someone else’s tissue and a lifetime of vigilance I will never get to set down. But what people don’t see is the silent math I do constantly: medications against blood work, blood sugar against meals, and how much energy I can ask of my body before I have to pay it back with interest.

Vital signs. Blood work. Medication levels. Appointments. It never ends.

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Cystic fibrosis (CF) was never just a diagnosis. It has been a second full-time job with no end date. The transplant didn’t save or retire me from it; it just changed the assignment.

I traded one set of impossible negotiations for another: immunosuppression that protects my lungs while straining my kidneys; medications that keep me alive while quietly taking a toll on my memory, my bone density, and the stamina I can’t spare.

Yet underneath all of this, those of us living with CF and transplant are somehow still expected to function inside a world built for people who don’t have to do this math at all.

Pay the bills. Keep the job. Show up. Keep going. And fight to be believed when we can’t.

Social narratives insist that we find our purpose, our community, and our contribution while our bodies negotiate in the background like a second, exhausting conversation no one else can hear.

There’s a particular loneliness in being told, implicitly or explicitly, that wanting — or needing — rest makes you less productive and, somehow, less worthy. But for me, rest isn’t a luxury. It’s maintenance.

What I didn’t expect, in the middle of all this, was the gift of other people who understand without explanation.

The CF community holds people who know what a flare feels like, who understand DIOS (distal intestinal obstruction syndrome) without needing a textbook, and who recognize the particular exhaustion of being grateful for a transplant while grieving everything it took to get there — sometimes at the same time.

But science can now explain how our lungs, our complications, and our timelines have diverged, each in their own direction. We don’t all have the same disease anymore. That’s something I’m still learning to hold gently.

Connection doesn’t require identical outcomes. It requires showing up for each other’s version of hard, even when it doesn’t look like our own. And our community does that with passion and grace.

If I’ve learned anything in these years — sick, then transplanted, then newly sick again in different ways — it’s that survival alone isn’t the same as living. I can manage every medication, attend every appointment, and fight every denial letter, but still be missing something essential if I never let myself laugh until it hurts, sit in the sun doing absolutely nothing productive, or call a friend simply because I miss them.

So here’s what I keep coming back to, the thing I want to say loudest: Rest is not failure, and joy is not frivolous. They aren’t the reward you receive after the real work of surviving. A large part of the work is being able to do these things while surviving.

Having CF and being post-transplant always means surviving. But a nap is not a day wasted; it’s a day defended. A genuinely good laugh with someone who gets it isn’t a break from the fight. It’s part of what makes the fight worth continuing.

This is the lesson and narrative society should be learning from us, as no one is guaranteed tomorrow.

I am still here, still negotiating, still doing the math every day, and still grateful. But I refuse to let this disease, this body, or this system convince me that joy has to wait until everything else is handled.

It doesn’t. And it can’t. Because there will never be a day when CF, or transplant, is “handled.”

So the lesson is to make room for joy every day and find it wherever I can. I hope you do the same.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.