My PH diagnosis takes another trip around the sun
A columnist reflects on how far he's come over the past eight years
Eight years ago, I meant to bid winter adieu from an all-inclusive beach resort. Instead, I welcomed spring from a hospital bed. I went on a trip — that’s for sure — just not the relaxing and restorative one I had imagined. There were no drinks with little umbrellas for me.
Springtime energy is full of renewal. When the late days of March give way to April, my pulmonary hypertension (PH) diagnosis turns another year older. Similar to a birthday, this season is a time to reflect, to take stock of where I’m at on my journey and where I might be headed in the next year.
Revisiting my pre-diagnosis hospitalization
Memories feel both vaguely distant and intensely present. I can tell you about the pain I felt waking up that morning in March 2016. I can recount the phone conversation I had with a nurse that prompted me to go to urgent care. I have no real recollection of the entire day spent waiting on a bed before I called my partner and my parents to tell them I was being admitted to the hospital that night. I spent roughly one week in the hospital before transferring to a second one for more than a few days.
Prior hospitalizations had prepared me for the needles, central lines, tests, and seemingly endless poking and prodding. While I could manage the day-to-day mechanics and the constant restating of symptoms and pain levels, I wasn’t ready for the extended stay coupled with the unknown prognosis, as doctors still didn’t know the exact cause of my severe shortness of breath. On the days that I would try walking through the halls only to have my oxygen levels desaturate below 90%, I wondered if I would ever breathe regularly on my own again, or when I could leave the building.
Hospitals are their own ecosystems where patients can feel cut off from the outside world. I watched episodes of “Chopped” on the Food Network in between getting wheeled away for various tests. I read some of Ron Chernow’s “Alexander Hamilton” and whatever magazines family and friends had dropped off. If I wasn’t looking at my phone regularly, it could’ve been any day of the week. After several days in the hospital, it’s not surprising that feelings of isolation and loneliness emerge — even if you have loved ones popping in and out during visiting hours.
It’s hard to imagine that anyone would anticipate spending a major holiday in the hospital; I sure didn’t. Yet there I was, dressed in my Easter best (a medical gown and fuzzy socks), doing all that I could just to get through the day. At the time, it was a reminder that not having your health sets you apart from others who might be celebrating a joyful occasion. Looking back on that experience, with the height of the COVID-19 pandemic in the rearview mirror, I think about how external circumstances shape how lonely and difficult holiday-timed hospital stays can be.
New year, same PH diagnosis
I still experience many of the terrible symptoms I had prior to being diagnosed with PH. The shortness of breath, chest pains, swelling, fatigue, and other issues haven’t vanished over eight years. And naming the disease hasn’t kept me from other hospitalizations.
The difference with having a diagnosis is the ability to manage it through treatments and other therapies and achieve some stability. My PH diagnosis also transformed unknowns into knowns, and I’ve been able to make some better decisions using this information as power.
Because PH is a progressive, chronic illness with no cure, I try to steer clear of any intrusive thoughts about when the other shoe will drop. I like to track my progress during six-minute walk tests to see whether or not the distances remain within range over time. I take solace in knowing that my medication regimen hasn’t changed all that much since I left the hospital for the first time with a proper diagnosis. I still commit time and energy to my career, as well as writing this column.
Even when I define progress as holding steady, I still have tough days. A shortness of breath flare-up can leave me exhausted or struggling against my better angels to use portable oxygen. I didn’t know if I would make it to five years post-diagnosis, so I’m grateful to wake up after the hard days to the possibility of good days ahead.
I’m happy to report that my partner and I did make it to that beach resort in the Dominican Republic, and we have wonderful memories from the trip. Here’s to another eight years — perhaps with a little more travel in the future!
Follow me on X: @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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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