Cris Dingman was diagnosed with pulmonary arterial hypertension in 2016 after many years of misdiagnosis. The Cincinnati native has long been interested in home renovations, playing sports and gardening. Her friends used to call her the “hummingbird.” But her PAH makes her feel like she’s morphed into a sloth. Dingman lost her husband in September 2023 and has been trying to remain optimistic despite her grief. She is a firm believer in kindness to others.
I was diagnosed with pulmonary arterial hypertension in December 2016, and was immediately put on oxygen.
Initially, I rented big oxygen tanks that I wheeled around on a cart, but I couldn’t manage the weight and size of the tanks with my arthritis.
A year and a half after diagnosis I got a home concentrator and a portable unit that I use when I leave the house. However, my Medicare and supplemental insurance plan do not fully cover both units. At first, I could only rent one or the other for five years at a time, not both. Without the portable unit, I was confined to my house. People shouldn’t be trapped in their homes because they can’t afford oxygen.
Eventually, I was able to purchase both units. The portable concentrator with an extra battery cost $2,700 – a steep price for the freedom to leave my house.
Initially, I was self-conscious outdoors, as my illness was more visible. I felt stares of understanding, pity and condemnation, as people assumed that I had smoked my way into this situation, which I didn’t. Now, I embrace my portable concentrator and encourage others to do so as well.
Having both oxygen units has given me some of my freedom back. Despite ongoing PAH symptoms, these units help keep my organs oxygenated both at home and outside.
Legislation should be passed immediately to make oxygen more accessible for each and every patient who needs it. This is a real sore spot for me.
It’s perplexing how a Type 2 diabetes drug used for weight loss is covered by insurance, yet oxygen units essential for basic mobility are not. There’s a huge difference between carrying extra weight and struggling to breathe.
Our government and insurance companies pay for so many treatments that are less essential to life than oxygen. I challenge them to try the PAH straw test: breathe through a straw while holding your nose. Hard? Now try doing that all day, every day. I’m guessing their policies would change.
