Alpha Stories

Published on Monday, March 19, 2012

Confessions of an oxygen user

Confessions of an oxygen user

I was diagnosed with Alpha-1 and moderate emphysema in January, 1993 – for the next five years, I didn’t use oxygen – and after testing my oxygen saturation levels, my doctor prescribed oxygen for me to use during exercise.

Shortly thereafter, he also prescribed it for sleep and for airline travel. For the next 10 years, I was pretty careful to use oxygen when I slept, traveled on airplanes and exercised on a treadmill. But that was all.

I ignored my doctor’s recommendation to use it when I had a lot of walking to do. For me, oxygen was a necessary nuisance. I avoided using it more than I absolutely had to. I convinced myself I really didn’t need it.

Then, early this year, my doctor had me take an echocardiogram. This was a test that I had taken routinely every two or three years, but this time it showed substantial pulmonary hypertension. I knew immediately that my life would have to change. My doctor and I agreed that I would go on oxygen 24/7.

But the psychological transition to oxygen 24 hours a day wasn’t easy. Knowing that oxygen was and is my best hope to prolong my life is one thing; accepting it is another. For me, this was a major life transition. I had a few rough days. Thanks to a number of Alpha friends who had experience with oxygen, however, I was back on track pretty quickly and considering my options.

I am a pretty active person, so I needed a portable oxygen system. My regular daily needs are only two to three liters per minute, using a pulse-dose during the day and continuous flow at night. But when I exercise on the treadmill and rowing machine, I need at least four liters.

I also wanted to be able to carry my oxygen on my shoulder. I know that others carry their oxygen in backpacks and around their waist, but for me, the shoulder is most comfortable.

Before making my decision, I not only talked to friends, but also consulted a number of helpful websites. Two of the best I found:

1. The American Thoracic Society Go to the site and type “oxygen” into the search box at left. A wealth of articles appears. You might start with this one near the top: “Why Do I Need Oxygen Therapy?”

2. Portable Oxygen, A User’s Perspective, which does a thorough job of comparing the strengths and weaknesses of various portable oxygen options.

I ultimately decided on the Helios system and ordered one from my oxygen supplier. At the same time, I asked to have my home concentrator replaced. I used it at night, and it had been behaving erratically. The very next day, a respiratory therapist came out to test whether or not I would be able to maintain normal oxygen levels while using the Helios. She explained its use briefly, confirmed that my oxygen levels were appropriate on this system, and left the Helios with me. The following day, a driver showed up with a tank of liquid oxygen and a new concentrator. He gave me a quick lesson in how to fill the Helios and left me on my own.

I used the Helios without incident for the rest of the day. Then, after supper, I turned on my new concentrator. I immediately smelled something funny, but chalked it up to the smell that one sometimes gets when using a brand-new product. I left the room and came back about five minutes later. The room smelled unmistakably like cigarette smoke. My “new” concentrator obviously wasn’t.

What could I do? It was time for bed. I couldn’t sleep with the pulse-dose Helios and my liquid oxygen tank had no setup for connecting my oxygen tubing. I could wait up in the hope that my oxygen company would deliver another concentrator later that night, or sleep with the window open and put the concentrator on the far side of the room. I chose the latter, even though I knew that it was likely that the cigarette smoke had also contaminated the oxygen I would be breathing. I did not sleep well.

I called my oxygen company first thing in the morning. I also sent off an email letter to corporate headquarters. The good news is that I got an almost immediate response. I got an apology and was told that, by company policy, my concentrator should have been discarded, and would be. I was also given an actual, brand-new concentrator and my liquid oxygen tank was set up so that I could use it at night in emergencies.

I realized that, for almost 10 years, I had been almost completely oblivious to the operation and servicing of the oxygen equipment upon which my life depended. I needed to educate myself. In order to do so, I turned again to friends, my oxygen company and the Internet.

Over the next week or so, I gathered books and pamphlets on the operation and servicing of all my equipment. My oxygen company provided some written information and also sent a supervisor out to train me. I downloaded information from the websites of the companies that manufactured each piece of equipment that I use. Now I have a basic working knowledge of how each piece of equipment works – and when and how it should be serviced. I intend to make sure that servicing is done. I also know how to operate my emergency backup systems.

Lessons learned:

First, if your doctor says you need to use oxygen, use it! It’s the only intervention proven to extend the lives of people with emphysema. If your doctor says you need it, you need it—even if you don’t feel short of breath.

Second, if you use oxygen, educate yourself! Learn the different types of oxygen systems. Learn about your oxygen equipment. Ask questions of your oxygen company. Check manufacturers’ websites. Insist that all of your equipment be in tiptop condition. Be sure you have emergency backup systems – and know how to operate them.

Your life depends on it!