CF life expectancy looks a little different now that I’m 30

A few weeks ago, in a remote corner of North Carolina, I turned 30.

My parents and I were staying in a rental cabin surrounded by towering tulip poplars and majestic oaks. Situated in a corner of a property aptly called Firefly Cove, we excitedly waited for the sun to set and the fireflies to emerge. They were what we had come to see.

Fontana Dam, North Carolina, is a tiny and dramatically remote town situated where the Nantahala National Forest meets Great Smoky Mountains National Park, recently famous for its diversity of firefly species that make quite a spectacle just after dusk. I say dramatically remote, because it’s a solid hour away from the nearest emergency room, an important consideration given my roundtable of chronic illnesses.

A recent study reports that fireflies are dying out due to a variety of reasons from light pollution to habitat loss. Places like this, with its thick woods that envelop you with darkness when the sun goes down, are becoming rarer due to generations of logging and subdivision development. As I watched the forest blink like a crowd of paparazzi, I thought about how our lives are equally delicate in so many ways.

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Science’s gift

When I was born in 1995, the average life expectancy of someone with cystic fibrosis (CF) was about 31 years old. As my mom remembers it, doctors told her it wasn’t guaranteed that I’d make it into my 30s. To put it simply: I didn’t expect to live this long.

If I did make it to 30, I always expected to be incapacitated, struggling to breathe, in and out of the hospital, and taking a constant rotation of high-intensity antibiotic regimens. I’d been reaching a level of constant sickness in my early 20s, but the introduction of CFTR modulators turned everything around.

Before I began treatment with Orkambi (ivacaftor/lumacaftor), I couldn’t make it through a 75-minute community college class without my loud coughing filling the room. My health had been declining so much that I needed IV antibiotics every six months or so. At the rate I was declining, I don’t think I’d be alive today without the breakthrough science of CFTR modulators.

The thing about a calculated life expectancy is that it uses data from the present and past. In other words, it doesn’t factor in scientific advancements over time. There’s no way to measure data that don’t yet exist.

So here I am at 30. (I’m still getting used to saying that.) It feels a bit surreal to be as healthy as I am at an age that once felt improbable.

Still, I’m cautiously optimistic. Modulators are a relatively new type of treatment, and we never know what the future holds. With chronic illness, there are always plenty of unexpected complications that can arise. Nevertheless, in celebration of my birthday, I choose not to worry about that right now.

Instead, I enjoyed watching the fireflies flicker and am grateful we’ve made it this far. In that pocket of wilderness, the amphitheater of bioluminescence surrounded us and offered a spectacular show.

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.