The year I turned 40, I celebrated for a week with my dearest friends and family and tried to feel grateful. The life expectancy of a person with cystic fibrosis was just 10 years at the time I was born, and here I was, ready to greet a fifth decade! I should have been triumphant, but I didn’t feel like rejoicing. My lung function had been in a steady nosedive for months, and I had just started using supplemental oxygen. Not only could I hardly keep up with my active 9-year-old twins, but I also spent more and more time in the hospital away from them. Two months after that milestone birthday, I was listed for a double-lung transplant. I tried to appreciate my life for what it was, but the daily struggle to stay alive overwhelmed all else.
Mortality is an early bedfellow for those of us with cystic fibrosis, after all. Many of us remember, as I do, the exact moment we truly grasped how short our lives might be. The resulting struggle to balance hope for the future with realistic expectations of what that future might hold is ongoing and lasts a lifetime. My peers with CF have all experienced the deaths of friends or family members from this disease, and we all carry with us the weight of those beautiful souls who weren’t as lucky as we have been. It can be an enormous burden at times, and it can foster a special kind of guilt when we don’t always feel grateful to be alive.
In the weeks and months after my transplant, something within me began to shift. As I slowly regained my health, complications and all, I began to feel more empowered by my age — proud, even, of the scars that dotted my body, physical reminders of a lifetime spent overcoming medical odds. I was in some sort of steroid-induced survival euphoria, where everything felt meaningful and miraculous. But when my vision started to get increasingly blurry, I panicked. Were post-transplant medications the culprit? Was CF-related diabetes finally catching up with me and causing new complications?
My ophthalmologist had a different diagnosis: middle age. He prescribed reading glasses. I came home — a little bit stunned — and told my husband the news. He looked at me seriously. “Have you ever considered,” he asked, raising his eyebrows ever so slightly, “that you're just getting old?”
The truth is, aging with cystic fibrosis is a relatively new phenomenon, and many of us aren’t prepared for the pressure, guilt, and even the joy that can come from outliving our original life expectancy.
But surely my husband didn’t think my journey with aging was somehow just beginning?
“I’ve felt old for years!” I laughed.
Mixed messages from the medical establishment have contributed to a warped sense of age for many of us. For instance, I wasn’t diagnosed with CF until the age of 11, and doctors used to regularly tell me I was quite “old” for receiving such news. When I was in my thirties, an infusion nurse seemed genuinely shocked that my original lungs were still intact. Perhaps most telling, I attended CF clinic appointments in the pediatric ward of my local hospital until I turned 28. I remember being newly married yet still waiting to see the doctor in the company of toddlers watching cartoons in a brightly decorated room. I used to ask myself, am I too old to have CF? Do I even have a right to be here? When CF centers all over the country finally opened adult clinics to address the ever-increasing life expectancy of those with CF, I could only wonder what took so long.
I’m 45 years old now, and although by no means geriatric, I am no longer just “old for a person with cystic fibrosis.” I am legitimately aging. I have more gray hairs than I’d like to admit, my wrinkles are deepening, and my high-school age children jokingly refer to me as a “Boomer.” I recently added a cardiologist to the suite of caregivers on my medical team, and I consider myself in the business of training new nurses on what to expect from a cystic fibrosis patient. (We are young and old, savvy and strong, and acutely aware of our bodies, for starters.) There will be mammograms on the road ahead, and colonoscopies, and even menopause to contend with.
Some of my favorite and most trusted doctors are nearing retirement, and I’m preparing myself to be open to the new — but mindful of the wisdom I have gained from living with this disease for so long.
I know how lucky I am to be in this position, and I try to stay present. The feeling that I’m well past my expiration date has begun to fade, especially knowing that a child born with CF today can expect to live 53 years and counting. My 15-year-old-sons grew taller than me this year — something I never expected to witness for myself. I look up into their faces, and I can only be overjoyed to have made it this far.
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