For many people, aging is an inevitable part of life, bringing with it the expected changes: wrinkles, slower metabolism, and the occasional creaky joint. But for those of us with cystic fibrosis, aging is an unexpected, sometimes miraculous, and often daunting journey. For decades, CF was considered a childhood disease, with most patients not expected to live past early adulthood. However, thanks to medical advancements and improved treatments, more of us are reaching middle age and beyond, facing new challenges that were once unthinkable.
When I was younger, the idea of aging with CF was never really part of the conversation. It wasn’t because I didn’t want to think about the future — it was because, statistically, there wasn’t supposed to be one. However, as treatment options improved and my health remained stable, the notion of a full and extended life became a reality. But with that came an entirely new set of challenges — physical, emotional, and even logistical — that I hadn’t been prepared for.
Physical Challenges: The Wear and Tear on the Body
CF is a progressive disease, meaning it doesn’t take a break as we get older; in fact, it worsens over time. While many of us celebrate the advancements that have allowed us to live longer, we also face the reality that our lungs, pancreas, and other organs have endured decades of damage. Chronic infections, inflammation, and scarring take their toll, and even with the most advanced medications, some aspects of disease progression remain inevitable.
One of the biggest challenges I’ve faced is the increasing difficulty in maintaining lung function. While younger CF patients tend to recover quickly from infections, it takes me longer now. Fatigue sets in faster, and a once-manageable cough can feel overwhelming. Even my routine blood work now requires constant monitoring and treatment adjustments.
The hardest part is keeping up with my kids. As they’ve grown from toddlers to double digits, they’ve gotten faster while I’ve slowed down. Playing outside, running around, and staying active with them is harder than it used to be. It’s frustrating to feel my body struggle to keep up with the moments I don’t want to miss.
Mental and Emotional Challenges: Navigating a New Landscape
Beyond the physical challenges, the emotional toll of aging with CF can be profound. Many of us grew up with a mindset focused on the short term because that was all we were promised. Now, we are faced with the unexpected burden of long-term planning — careers, relationships, parenthood, financial stability, and even retirement — things we never thought would apply to us.
Living with CF can feel isolating and, as we get older, that isolation can deepen. While childhood and adolescent years may have been filled with supportive medical teams and family members rallying around us, adulthood often brings a different reality. Friends without CF may move on with their lives, building families and careers, while we navigate frequent hospital stays, increasing fatigue, and the unpredictability of our health.
Personally speaking, what’s been even more sobering is seeing my friends in the CF community face acute organ rejection or get listed for a double-lung transplant. It’s a harsh reminder of what this disease can take, making me appreciate every healthy day even more.
Additionally, there is a strange sense of survivor’s guilt that many older CF patients experience. We’ve lost friends to this disease, and while we are grateful for the chance to continue living, we carry the weight of those who were not as fortunate. It’s a complex mix of gratitude and sorrow that can be difficult to process.
The Logistical Hurdles of Adult CF Care
Another significant challenge of aging with CF is the transition from pediatric to adult CF care, which, for many, can be daunting. CF care teams are incredible, but the medical system is not always set up to handle the unique needs of aging CF patients. We are now encountering healthcare providers who may not be well-versed in CF as a lifelong condition, and we have to advocate more strongly than ever for the specialized care we require.
Access to medications and insurance coverage also becomes a more pressing issue. As we move through adulthood, managing work, disability, or insurance changes can become a full-time job. Many CF patients find themselves in limbo — too sick to work full-time but not sick enough to qualify for disability benefits. The financial strain can be overwhelming, particularly when balancing the costs of frequent doctor visits, medications, and hospital stays.
Finding Strength and Hope
Despite these challenges, there is immense resilience within the CF community. The fact that we are aging at all is a testament to our strength, the dedication of researchers and doctors, and the unwavering support of families and friends.
We are rewriting the story of what it means to live with CF. We are pursuing careers, becoming parents, traveling, and advocating for better care and policies. We are proving that CF is no longer just a childhood disease — it is a lifelong journey, one filled with struggles but also with joy, achievement, and purpose.
Looking Ahead
The road ahead is still uncertain, but one thing is clear: we are living proof that progress is possible. For those of us aging with CF, every birthday is a victory, and every challenge overcome is a testament to our resilience.
To my fellow CF warriors — whether you’re just stepping into adulthood or navigating middle age, know that you are not alone. Our journey is complex, but it is also meaningful. We have been given the opportunity to live, to love, and to continue fighting for a better future for ourselves and for the generations that follow.
So, here’s to growing older with CF — an unexpected journey, but one worth every breath.
Interested in sharing your story? The CF Community Blog wants to hear from you.
