I’ve been quiet in this space for longer than I intended to be. Call it writer’s block or an exceedingly busy work schedule or no particular reason, really. I just didn’t put fingers to the keyboard in a way that produced any writing worthy of sharing with the world. But these past few weeks have been different, and I began to reflect on how the recent Easter holiday represents a bit of a homecoming for me on my PH journey.
Have you ever been stuck in a hospital room on a major holiday? Maybe you were supporting a sick family member or friend. Maybe you worked at the hospital and you drew the short straw for the holiday shift. While both of these roles provide a tremendous amount of support and care for patients, these people eventually see their ways to the exit. That is not so for the person lying in bed hooked up to all of the machines with their blinking and never-ceasing beeping. That person would need to Houdini their way out of the bed.
On Easter Sunday 2016, I was that person stuck in the hospital bed. In fact, the highly unflattering photo below (titled “Man with Cannula”) gives people a glimpse of what I looked like. For me, that day marked day seven of a much unexpected, but highly adventurous, nearly two-week hospitalization for what the doctors decided — temporarily, of course — was a bout of severe pneumonia. There were no chocolate bunnies or jelly beans, but rather plenty of blood draws and diuretics to push fluid out of my body. No doubt, the expression on my face says it all.
Now, this was not my first rodeo penned up in a hospital bed overnight, and I’ve experienced my fair share of extended stays due to pulmonary health challenges. However, this one felt like an outlier. There were few immediate answers for one, and multiple hospitals for another; a merry-go-round of tests and revolving door of doctors, nurses, and specialists. Life inside the four walls felt predictable and repetitive. As Nietzsche famously expressed through Matt McConaughey’s character on “True Detective,” “Time is a flat circle.”
Life in a hospital bed can be frustrating and isolating. I was lucky enough to have loved ones with me during my stay, but my connection to the outside world was mediated through them, much like my stay with the hospital felt mediated by doctors and my body’s reaction to different medications. To be honest, I probably would not have registered that it was Easter if somebody hadn’t alerted me to the fact. Sure, it was Sunday, but it could have been Friday or Wednesday for all I could tell.
Once I crossed the one-week mark, my mind wandered to the other inhabitants on my floor to consider how many days other people had been stuck in their hospital beds. For some, it was probably their first night, and for others, the first night of their second month. During my previous stays, I never thought about the duration in terms of days, but rather in terms of the process and what needed to be done to solve the health struggle at hand. That line of thinking does not always work out, though, when it is still unclear to the doctors why your oxygen levels continue to drop and you exhibit ongoing shortness of breath.
After performing a right-heart catheterization, the pulmonary team diagnosed me with pulmonary hypertension, setting me on a course toward a new normal. A few more days in the hospital and I would be off to manage my new normal as a patient surviving with PH.
You might be wondering why I haven’t mentioned feeling scared or nervous about being cooped up in multiple hospital beds. Those feelings never showed up until the end, and they made themselves known because PH is a rare disease, unknown to me until the words left the doctor’s lips. That fear almost made me get up from the bed and run for the exits, but the lack of oxygen would have ruined an otherwise fool-proof plan. Instead, I heard the CliffsNotes version of life with PH, gathered up my oxygen tank and belongings, and looked forward to sleeping in my own bed.
At this time of year, when winter fades slowly into spring and new life starts to bloom, I think back to my hospitalization and my PH diagnosis. Two years later, it still can be all too easy to let bursts of fear feed a simmering anger about waking up each day with a rare, chronic illness with no cure. Instead, I try to embrace the rebirth and renewed spirit of the season by focusing on hope, discovering more about myself in this #PHight, and advocating for a cure.
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.