My journey with long-term supplemental oxygen due to COPD

While the name of this column is “Life Tethered to a Concentrator,” so far, I haven’t yet discussed my journey with long-term supplemental oxygen. Today, I’d like to take you along on that journey.

I was in denial — one of the five stages of grief — for quite some time after my diagnosis of chronic obstructive pulmonary disease (COPD) 10 years ago. Afterward, I returned to work as a jewelry coordinator at a large department store chain and tried to live as normally as possible. I didn’t attend a follow-up appointment with a pulmonologist that was arranged by the hospital.

Hey, I was OK, so there was no need for the trip, right? After all, my primary care doctor is an allergy specialist, and the hospital prescribed an inhaler. Why waste my time and money going to another doctor?

But the necessity of an appointment with a pulmonary physician became clear one morning when I was unable to catch my breath. Still, I was afraid I’d be turned down for an appointment because of how I had acted when I was diagnosed.

Thankfully, this fear didn’t come to fruition. When I explained how hard it was for me to catch my breath, I got an appointment within two days.

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Oxygen prescribed

When I arrived for the appointment, I was taken back to an office by a nurse who began the intake process. After checking my oxygen saturation with a pulse oximeter, she told me I qualified for long-term supplemental oxygen.

She hooked me up to an oxygen concentrator in the exam room and finished gathering the intake data there. She came in later and took my oxygen saturation levels again, and they had recovered to 98%. She checked the setting on the concentrator, which was at 2 liters per minute.

From this information, I was prescribed 2 liters per minute of oxygen at rest and 3 liters per minute for sleep and activity.

The nurse set up an appointment with a durable medical equipment (DME) provider. I was given a SimplyGo mini portable oxygen concentrator to use until the DME could provide a large concentrator the next day.

As is probably true for most people on oxygen, I have a large home concentrator that supplies oxygen at a purity rate of at least 90%. I am connected to the concentrator by oxygen tubing that is then attached to a cannula inserted into my nose. I have 50 feet of tubing connected to the concentrator so that I can move around my home. I have learned to coil the tubing in my hand so I don’t get tangled up in it and fall.

The problem with tanks

My DME supplies and services the large concentrator and the portable oxygen tanks. The problems with tanks are many for a person who is 5 feet tall. If I use the shoulder strap that is provided, for example, I soon have to switch it to the other shoulder because of the weight. Plus, a shoulder carrier doesn’t allow both of my hands to be free.

I have tried to use the shoulder bag as a cross-body bag, which does allow me to have both hands free. The problem here is that my shoulders tire from the weight of the tank, just as with the shoulder carrier. The tank also moves from side to side as I walk, which becomes annoying.

I investigated the price of a specially designed backpack for carrying oxygen tanks and found the cost to be ridiculous, so I purchased a medium-priced backpack. This allows both of my hands to be free, but limits my ability to bend over because the tank slides forward. I’ve found that wearing a belt threaded through the backpack solves this problem. I’ve also found a backpack that has a lower strap to keep it in place.

Portable concentrators

Try envisioning having to simultaneously manage the tubing from an oxygen concentrator and the electric cord of a vacuum cleaner. It causes a lot of frustration, so at this point, I use my portable concentrator to keep me saturated while I run the sweeper.

Once we are into the hot weather of summer, I put on my portable concentrator immediately after I get dressed because the large concentrator produces a lot of heat.

I prefer to carry the portable oxygen device in a fanny pack, which is almost as good as not being on oxygen at all. I have enough batteries to last 12 hours.

Another advantage of the portable concentrator is that it has a warning beep when the battery is about to run out. The tanks have no warning, so I must hook up another tank while I’m short of breath, which is difficult.

These are some of the issues I manage with COPD as I’m “tethered to a concentrator.” What are your experiences? Please share in the comments below.

Note: COPD News Today 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 COPD News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to chronic obstructive pulmonary disease.