Going Round After Round, Even When the PHight Knocks Me Down

I’m like a boxer barely holding on in the 11th round, just waiting to hear the bell in the final quarter of 2022. These days, this PHighter is relieved to still be in the ring.

While doomscrolling through Twitter recently, I saw a prompt posted on the Pulmonary Hypertension (PH) News Forums that asked, “How are you kicking butt while managing PH?”

I thought, “Well, actually, I think PH and this year might be kicking my butt!”

Taking a COVID-19 uppercut in Round 1

My year began with a case of COVID-19 — a surprise uppercut to the jaw before I was even geared up for the match. I’m grateful I was able to manage my symptoms and make time to rest and recover.

I wrote previously about how living with pulmonary hypertension helped me get through my COVID-19 experience. Managing a rare pulmonary disease gave me the tools and knowledge I needed to respond to any dips in my oxygen levels or excessive shortness of breath. Having a PH care team also helped me make sense of the unknowns, and my doctor in Washington, D.C., was able to share my medical records with a doctor local to where I was quarantining in California.

While COVID-19 didn’t knock me out, I’m frustrated that I didn’t give myself enough space and time to fully recover from some lingering brain fog and shortness of breath. Our many obligations in life can scream so loudly that they drown out the voices of our bodies telling us we need more rest. I wish I’d given my body more time. Instead, I wiped my brow and left my corner to return to the center of the ring.

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Rounds and more rounds when days feel like weeks

In the Forums discussion, moderator Jen Cueva mentioned how PH makes it challenging to complete tasks. Fatigue, or feeling extremely tired, is one common symptom of PH. Not only can low oxygen levels make it more difficult to do simple tasks, the amount of energy we exert to accomplish said task can leave us exhausted.

Everyday activities, such as taking out the trash, folding laundry, or commuting to work, can treat our energy reserves like a punching bag, alternating left and right hooks. It’s impossible to count how many times making up the bed or carrying groceries into my apartment has left me up against the ropes, gasping for breath.

I’ve managed a PH diagnosis since 2016. Throughout those six years, there have been days when I throw a jab at the disease, and days when the disease hits back.

In addition to daily activities, many tasks are required to manage symptoms and side effects of PH. So much time goes into treating flare-ups, keeping track of and taking medications, refilling prescriptions, scheduling appointments, meeting with multiple doctors, navigating preauthorization requirements, and everything in between that it can feel like a full-time job. For those of us who already work a full-time job, there’s the added challenge of finding the space and time to manage PH.

Too many days this year felt like weeks, warping my sense of time in the worst possible way. My personal, professional, and PH-related obligations seemed to multiply with no end in sight. There were moments this year when all of my responsibilities really kicked my butt, and I came up short in one way or another.

I often feel like PH management is what keeps me bobbing and weaving to avoid jab after jab, all while doing my best to remain compliant and healthy. When my to-do list grows longer than a CVS receipt, I can forget to charge my portable oxygen concentrator, put off walking on the treadmill, eat poorly, or delay scheduling a follow-up appointment.

Kicking butt with a good checkup in the last round

Negative thoughts about my struggles with PH management spend so much time in my head, they should pay rent. But the original Forums question asked how I’m kicking butt, and I can’t let that go unconsidered.

Professionally, I was able to deliver some wins for my clients and support my co-workers during some of our busiest moments of the year. Personally, I showed up for loved ones and friends to celebrate special occasions, and I surpassed my reading goal for the year.

My last quarterly checkup for the year even left me feeling encouraged. I did the six-minute walk test on less oxygen than normal, and the distance I walked was comparable to my results the previous quarter. Even against the ropes, I can still find it in me to punch above my weight and kick butt right back.

Follow Mike 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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.