Life expectancy is on my mind. Maybe it is because we are in the new year. Maybe it is my impending doctor’s appointments and tests that will update me on the progress I’ve made in my PHight with pulmonary hypertension (PH). Maybe it is because life is fragile and, chronic illness or not, nobody is promised any set number of days. There is something beautiful in that uncertainty that binds us all together.
A few days after the doctors delivered my PH diagnosis, they could not guarantee that the disease wouldn’t send me back to the hospital in the near future. PH is a rare disease that affects the heart and lungs. There is no cure for PH, and without proper treatment and monitoring, I can count the estimated years of life expectancy on one hand. While this was terrifying to learn in the spring of 2016, it remains unnerving today, constantly on my mind, yet also something I am repeatedly pushing to the deep recesses, shut away not to be thought of, if I can help it. Still, every time I feel my heart race or I find myself gasping for breath, I wonder if a hospital visit isn’t far away.
Life with a chronic illness or rare disease can muddle one’s sense of time. Thanks to a mixture of good days and bad days — not to mention a raft of side effects — I’m never really sure if I’m running a quick sprint or building stamina to make it through a hard-fought marathon (figuratively, of course). People around me constantly tell me to slow down or take it easy. Is there a secret to slowing things down? I can’t help but wonder if slow and steady means an extra day marked on the calendar.
My stubborn nature makes it hard to slow down. Throughout my life, I’ve done my best not to let any health challenge define my day-to-day activities and professional ambitions, or limit my sense of how far I could go — no matter the destination. You can imagine how I have felt adjusting to the “new normal” that comes with a PH diagnosis, and the need to make sense of where my life is headed next. Three months after the hospitalization that led to my PH diagnosis and completion of pulmonary rehabilitation, I took a new job. I made the switch because I did not know if I would be able to fulfill this professional goal later on in life. While I enjoyed every minute of that job, it also helped me realize the importance of self-care in managing a chronic illness, and how taking the time to put my health first has the potential to keep me healthy for other new opportunities.
Thoughts of life expectancy with PH also drove me to start writing this column. I always knew I wanted to write more but I walked through life as though writing was some far-off goal that I would get to … eventually. I also wanted to give back to the other PHighters in this community who helped ease my emotional anxiety in the aftermath of my diagnosis. Reading about other survivors with PH living longer than the typical life expectancy gave me a sense of hope and optimism for many more days and years ahead.
Life is what you make of it — how you celebrate during the good times and persevere from one hardship to the next. How you make sense of what might seem like unfathomable or unfair hurdles when you just barely have the energy to jump over them. It can be challenging to maintain a posture of stamina for that hard-fought marathon that is often necessary when your journey includes a rare, incurable illness.
My friend recently hosted a gathering to mark the 19th anniversary of her cancer diagnosis. This was a special number for her considering she has been living and fighting with a rare form of cancer since before she turned 20. A survivor who continues to defy the odds, she pursues her career passions and lives her life out loud. She embodies perseverance and goes out of her way to use her story to help others struggling with their own health issues. Cancer and PH are obviously different diseases and my intent is not to equate the two here. My friend and I face very different battles, but I think it is helpful to look for commonalities in how people with significant health challenges can support each other and persist despite the uncertainty.
I’m a few months shy of the two-year anniversary of my PH diagnosis. While the daily sprints might leave me feeling winded some days more than others, I am doing my best to look ahead to that 10-year mark, thinking not in terms of life expectancy but stamina to face that uncertainty that unfolds before us all.
Follow Mike Naple on Twitter @mnaple.
Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.