Nancy Zeppa, 60, is a leader of the Pulmonary Hypertension Association South Jersey Support Group. Her journey with oxygen began in August 2019 when she was diagnosed with pulmonary arterial hypertension.
We desperately need more options, which won’t come without a higher demand for oxygen access reform.
Oxygen was all I had when I was released from my suburban hospital with a diagnosis that sounded so simple until I consulted with “Dr. Google.”
Durling my hospital stay, I never saw a respiratory therapist. When I was released, they provided an oxygen tank and mentioned equipment would be dropped off at my home. True to their word, the equipment was delivered. Instructions included changing the tubing every two weeks.
I fought for a portable oxygen concentrator and eventually received one, but to be honest, it is awful. The battery barely lasts an hour. The “home concentrator” is large and very noisy. However, because you are getting oxygen, you get used to the noise. Fortunately, I am lucky that I do not require high flow.
There is no perfect solution for me. I am well enough to get around on short excursions, but I need oxygen for longer trips. My options are noisy, heavy and cumbersome to carry. My mobility is already compromised due to PAH and adding supplemental oxygen makes it harder.
Air travel is especially challenging. Airlines require you to have one and a half times the battery power compared to the length of the flight. That requires the purchase or rental of additional batteries. Patients using compressed air tanks need to rent a concentrator for flights, which can be costly.
We desperately need more options, which won’t come without a higher demand for oxygen access reform.
The next time you see someone out and about with oxygen, give them a smile. They need it. No one thinks about oxygen until they need to. By then, it is often too late.
