When you reach middle age, you start to realize that your body is beginning to break down. You wake up with a pain somewhere for no apparent reason that was never there before. You just don’t seem to have the energy you had before. Going to a late-night event may require a nap in the afternoon. And the partying you may have done in your 20s, well that’s a thing of the past. You realize that you’ve crested your physical peak — you’re over-the-hill as they say — and it’s all downhill from here. This realization comes at different times for different people depending on how well they take care of themselves or their underlying health issues, such as CF. But at some point in time you will comment, “It sucks getting old.” To which my response is always, “Yeah, but it sure beats the alternative!”
When I reached middle age, my undiagnosed CF symptoms really started to affect me more than what would be considered normal aging. I remember sawing a branch off of an apple tree one crisp March morning and becoming so worn out and out-of-breath, I said out loud to no one but myself and the apple tree, “I’m too young for this to be happening, I’m not even 40 yet!”
On the other hand, I had started to make some healthy choices that would seemingly slow my descent down the old-age hill. For one, I modified my diet in response to my pancreatitis incidents. As a younger man, I could eat whatever I wanted and never really gained weight. Now I needed to avoid saturated fats. Every day I would begin with a bowl of oatmeal with blackberries or blueberries for breakfast. Then a non-fat yogurt mid-morning snack, a turkey sandwich for lunch, fruit/veggies for another snack, and fish, chicken, or pasta for dinner.
I also began limiting alcohol to one or two drinks per day, and then eventually cut that out completely. I’ll leave that story for another day but suffice it to say that I felt much better and looked a lot healthier after making these changes. I do not miss those morning hangovers, not one bit!
And then after years of what would turn out to be CF symptoms slowly worsening, I finally received the diagnosis that changed my entire world.
It was the dawning of a bright new day the morning that I was welcomed at the adult CF care center within Hasbro Children’s Hospital in Providence, R.I. Opening the door to a team of nurses, doctors, and specialists, like pulmonologists and dieticians, has been instrumental in helping me understand this disease and access ways to treat it. Everyone I have met there has been so very kind, caring, welcoming and highly knowledgeable in everything related to CF. Life expectancy for CF patients has dramatically changed recently, and while it might seem strange at first to visit a children’s hospital for care, just think about the fact that only 20 years ago, there were only around 300 people in the U.S. over the age of 50 living with CF — now there are over ten times that! So, what was once considered a childhood disease is now being managed to allow many people with CF to live longer and healthier lives, hence the need for adult CF care centers.
After starting CFTR modulator therapy, I feel like I’ve not just stopped my biological clock but actually started turning it backwards. I feel younger today than I did one year ago, and being well past middle age, I never imagined that anything like this would be possible. I now can ride a bike for over two hours and 20+ miles at a time. And while my lung capacity is still less than 80% of normal, I’m OK with that — it’s vastly improved from before. Physically, I can be as active as I wish to be now. I can breathe better, I don’t lose so many electrolytes through sweat, and my recurrent sinusitis issues have cleared up. Simply incredible if you ask me!
One other thing that happens to many people who are my age is we begin to take on more responsibility in caring for our now elderly parents. In my case, I lived close to my parents, so I was physically there to help them navigate their final tragic years. My father developed a kind of dementia that required constant care at a specialized memory care facility. I tried to help my mother live on her own for a while. At that point, she was suffering from severe shortness of breath and chronic GI motility issues.
It’s too late to know, but I wonder if her symptoms could have somehow been connected to CF. Plans would be cancelled due to what she politely called bathroom attacks. She was taking Tylenol around the clock for sinus headaches. Her ability to breathe became so compromised that by the end, she wasn’t even able to shuffle from the bedroom to the kitchen without getting totally winded. She received a diagnosis of pulmonary fibrosis, but by that point it was far too late to do much about it, and she did not survive her final trip to the ER for an intestinal blockage as her heart finally gave out.
Helping her while she struggled to maintain her independence, having severe symptoms that I was starting to feel as well — I felt like I was watching my own future playing out before me. This was before I received my CF diagnosis, mind you.
If only we had learned about CF earlier, would treatment have helped her? Would having the right information have helped my mother live longer or at the very least ease her pain? I feel pretty certain that it would have. But sadly, we can’t go back in time, so I’ll never really know. I can’t change the past. But I am thankful that for myself and many others like me, recent advancements in this field have greatly improved our quality of life and with life expectancies increasing, the outlook for the future is bright.
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