How supplemental oxygen helps my husband stay active
I like to think of him as Iron Man, given his use of technology to thrive
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My husband, Donnie, has been introducing our youngest daughter to the Marvel universe. Watching the movies together, I told her that she and Donnie are like Tony Stark, also known as Iron Man, because they both need a little mechanical help to keep their bodies working as well as possible.
Our daughter uses an insulin pump because her pancreas doesn’t produce insulin, and Donnie uses supplemental oxygen because his lungs don’t work as well as they should. Like Tony Stark with his Arc Reactor, all three rely on technology to keep their bodies functioning as well as possible, and all three are living their lives to the fullest with its help.
In previous columns, I’ve written about Donnie’s lengthy road to a pulmonary fibrosis diagnosis. It took quite some time for my husband to find the right doctor to help him, and by the time we got there, his lungs were in pretty bad shape.
At that first appointment, Donnie’s oxygen saturation was lower than it should have been, and just the short walk from the car to the office building tanked his numbers. His new doctor prescribed supplemental oxygen at that appointment. Looking back, he remembers feeling scared and defeated, and undeniably angry that he needed to use oxygen, especially at his age and when he had never been a smoker. I was also worried and wondered how he would adapt to the changes.
A little ingenuity
At first, Donnie was supposed to use his home oxygen concentrator whenever we were at home. We weren’t sure where to place the machine, so we decided to put it in the master bathroom so we could shut the door at night to muffle some of the sound. With a long hose, he was able to reach every part of the house, and the sound wasn’t loud enough to keep us up at night.
Nowadays, since his lungs are less inflamed and his oxygen needs have lessened, he rarely needs to use his home oxygen concentrator except while sleeping. In the years since it was delivered, he has rigged up a system that makes it a little easier to transition from daytime to sleeping. Because he finds it cumbersome to switch his nasal cannula to his CPAP (continuous positive airway pressure) machine, he keeps one dedicated hose for his CPAP and another for his cannula, switching the ends at the machine as needed.
The second part of the equation we had to figure out was how to manage his oxygen while traveling to and from work, and throughout the day. At first, he was given oxygen tanks, but due to a 45-minute drive both ways and an eight-hour workday, we were switching tanks out almost daily. After a little research, we inquired about a portable oxygen concentrator, and he was fortunate enough to receive an Inogen G5, which he has used daily since.
Over the past few years, he’s learned a few tips and tricks to keep things moving as easily as possible. One of the first purchases he made after receiving the Inogen G5 was a backpack crafted especially for portable oxygen machines. It has special netting that allows proper airflow to the machine, and is large enough to fit his daily medications, pulse oximeter, and other items he might need throughout the day. He has also found that running the hose through the loop of his backpack helps prevent it from kinking.
After he purchased the backpack, he decided to add an oversized carabiner hook to the bag. It comes in handy when he doesn’t want to wear the backpack or when he doesn’t want to set it on a public floor, such as in the restroom. He can hang it on the bathroom hook or clip it to the handicap rails in the stall if needed.
Lastly, during a trip to Colorado a couple of years ago, we decided it would be a good idea to purchase an extra (and larger) battery so we could get more time between charges. We rarely need to use both, but it’s super helpful to have a backup for long trips, such as going to the zoo or an amusement park. That way, if one battery gets low on our adventure, we can swap it out for a fully charged one.
While Donnie would obviously rather not be tethered to a portable oxygen machine, he knows that many of the things he participates in would not be possible without it. He has been able to go golfing, bowling, and on two vacations because of his machines, which would be basically impossible without the extra help. Like Iron Man, he just needs a little help to stay as active as possible. Until a cure is possible, we remain grateful for medical and technological advances.
Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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