Requiring supplemental oxygen weighs me down in more ways than one

I first had to use supplemental oxygen outside of a hospital during flights. This change took place when I was in high school, and one of those flights was for a school trip. I still remember sitting in my window seat, a hat pulled low over my head, trying to minimize the chance of anyone seeing me.

During my time living with pulmonary hypertension (PH), my decision to largely forgo supplemental oxygen was based on quality of life. Given the specifics of my diagnosis, oxygen wouldn’t improve my health; it would only mask my symptoms. For me, this wasn’t worth the social and physical implications of hauling oxygen supplies around and wearing a cannula on my face. Like most kids, I just wanted to look and feel normal. During my final six years living with PH, I used it while sleeping, but otherwise stubbornly avoided it.

After my heart and lung transplant in 2018, I no longer had a choice. I’d suffered complications, and my new organs couldn’t compensate as well as the ones I’d been born with, so I required oxygen at all times. Since then, my oxygen needs have varied, but I’ve never been able to go without it.

Additionally, because of my trach, I require continuous flow oxygen, which has been one of the hardest burdens I’ve faced since my transplant. At home, I’m tethered by 50 feet of tubing to one of two concentrators. To leave the house, I bring metal tanks along with me. They are heavy and, frankly, feel archaic. I fill these tanks with a filling station that connects to one of my home concentrators, another task to keep up with regularly. If I don’t refill them after use, I can’t leave my home.

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The other day, my primary concentrator malfunctioned, so my oxygen provider came to replace it. Unfortunately, the only replacement they had available was of a different capacity. This would either make my tanks less effective or prevent me from filling them at all.

Ultimately, this is a short-term problem that will be resolved soon, and it won’t be a disservice to me. Still, the situation stirred up deep-seated feelings in me, and I found myself in tears.

Simply put, my reliance on oxygen exhausts me. This feeling traces back to my time living with PH, and it’s so hard to believe that my needs have only increased, even after transplant. There are days when the physical burden of carrying a tank out of the house is suffocating. It is a physical and mental weight that completely changes how I interact with the world, and it’s so tiring that I can’t go a day without literally carrying this need along with me.

This complaint has no solution. I cannot stop using oxygen. But I also refuse to let the mental fatigue override my desire to be out doing the things I love. For this reason, I’ll continue to push through. I know there are many other people, especially ones living with PH, who can relate to these frustrations. I hope that someday soon, better options for oxygen use will be introduced. To anyone who is maintaining their health using supplemental oxygen, I salute you. I know it’s not easy.

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.