Why Should I Wear My Oxygen?

Posted on December 11, 2015   |   

This blog post was written by COPD State Captain "Uncle" Jim Nelson. He and his wife, Mary, are active COPD community advocates.

Okay, first, you deserve to know that I know what I am talking about. After a premature birth, a childhood of second and third-hand smoke, and personally smoking pretty heavily for 20 years, I was diagnosed with severe COPD in 1995. After learning everything I could about the disease, wearing oxygen at night and while exercising, and seemingly a million miles on the treadmill, I was blessed with a double lung transplant in 2011.

Since the transplant, Mary and I have spoken to hundreds of patients and their caregivers and traveled to many conferences to present the viewpoints of the lung disease sufferer and the woman who helped to keep him alive for so many years. So, when it comes to using supplemental oxygen, I have been there! I initially went through the traditional hesitation to be seen wearing the cannula. That is a disturbingly common trait among oxygen users, especially those newly prescribed. So, my first question to you is this: What excuse are you using not to wear your oxygen when you know you should?

Jim For me, it was the usual. I was 55 years old. Mary and I worked every day in our accounting office, and we were active with the Chamber of Commerce, with Rotary and Hospice, and with the Community Theater that we had helped to form. Every day, I met and talked to neighbors, friends, and clients. I was tall and athletic-looking, I had been hunting big game in the Colorado Mountains for some years, and I didn’t want to suddenly appear looking weak, sick, and vulnerable. (My vision…) Fortunately, in the early years, I only had to wear oxygen at night and when exercising, so I could successfully hide my frailty. I gradually backed off from hauling a rifle up and down hills, and did more boating, more fishing. No one noticed because it came upon me so very slowly.

That all lasted until a bout of pneumonia resulted in orders from the doctor to use oxygen 24 hours a day, at least for a while. So, I showed up at the office, at Rotary meetings and Chamber functions in a cannula. It was a small town, and the word spread quickly. Interestingly, whatever embarrassment or hit to my ego that I had expected was overshadowed by an outpouring of love and support and concern that blew me away!

From then on, I truly gave no more thought to stares or imagined pity. I wore the oxygen when I needed it, without fail! I bought my first pulse oximeter, so I could track my saturation level. The cannula was a conversation starter, it was an educational opportunity, it was a lifeline!

So, again… What excuse are you using not to wear your oxygen when you know you should?

Let me tell you a few things that you are doing by refusing to be seen with a cannula!

You are damaging your heart! The right side of your heart is the side that pumps blood into the lungs so that it may be oxygenated. The less oxygen the lungs get, the more the lungs deteriorate, and the harder the right side of the heart has to work. Gradually, it enlarges and grows weaker. Eventually, that weakness can result in congestive heart failure and inconvenient stuff like death.

You are damaging your brain! Lack of adequate oxygen destroys brain cells. Most experts agree that, once gone, those brain cells, those memories and that reasoning ability and the skills of which you are so proud don’t come back! In the place of the names of your grandchildren is, simply, nothing.

“So?” you say… “It’s my body! It’s my heart and my brain!” you say…

Yep! You are right! Your body, your rules, and you can just go right ahead and deprive the cells of your body of necessary oxygen all you want to. Just try not to forget the people who love you. Remember your spouse or whoever else is charged with acting as your caregiver.

HOWEVER, let me tell you a few other things that you are accomplishing by refusing to be seen with your cannula. They have nothing to do with your own self, but they certainly affect the other 30 million or so Americans, the hundreds of millions worldwide who have lung disease.

The funding for COPD research, please pardon the expression, sucks! It is absolutely abysmal, compared to the number of deaths from lung disease. The funding for research for HIV/AIDS is enormous, again compared to deaths from that disease. Why does the difference exist? AWARENESS! Publicity and exposure and movies about the disease. Everyone knows what AIDS is. About half of the people that you will encounter have ever heard of COPD and a lot of them don’t really know what it is or what it does.

So, why is it so hard to spread the word about COPD, the third leading cause of death in the U.S., and the only one that is increasing? Because we are making it invisible!

By refusing to wear your cannula out of the house, by staying home instead of going shopping or out to eat or to the theater, you are contributing to the invisibility of the disease. By hiding, by isolating yourself, by disappearing from the sight of friends and the rest of the populace, you are defeating any ability for others to learn about lung disease. Why should any member of Congress vote in favor of funding for COPD, or for any bills that might be favorable for us, if they never, ever see anyone wearing a cannula? How much of a problem can it be if nobody is wearing supplemental oxygen? Mary and I have met with numerous members of Congress and their aides, and it is rare to find anyone with any knowledge of COPD unless they have a close family member with the disease.

See what we are accomplishing? Sad thing is, we are far from alone. We live in a retirement community, and it is hard to walk down the street without seeing an oxygen delivery truck. Do we ever see anyone outside with a cannula? Hardly ever! A neighbor across the street, who had been prescribed O2 24 hours a day, would come out cannula-free and work in her garden until she couldn’t catch her breath. Then, she would stagger into the house and lay down with her oxygen. Sadly, one of us would have to go over every couple of weeks to help, because she had forgotten how to turn on her E-tank. She is now in a nursing home, with little idea who she is or why she is there…really sad. Yes, we talked to her, and her reply was consistently, “I’m not wearing that damned thing!”

I could go on for days, but you are sick of my preaching to you by now, so let me close with this: Please do me a favor, do yourself a favor, and do the entire COPD community a favor. I was faced, that long ago day, with getting over myself! I did it, and if I could do it, you certainly can. Next time you have a chance, grab all of your oxygen stuff, put on that cannula, and get yourself out of the house! Wear it proudly, and notice that just about nobody even sees you! They all have their own issues, and most people could not care less!

Meanwhile, you will be accomplishing several things; you will be helping us to raise awareness, you will be showing other people with lung issues that it is really okay to wear their cannula in public. By the simple act of appearing with your cannula, you will become a part of something much greater than yourself, and you will be doing wonders for your own personal quality of life! Isn’t that what is all about?

Just for fun, when someone asks you how you are, either reflexively or through genuine concern, just reply “Fantastic!” I got into that habit many years ago, and it gets you some surprised looks. You can almost see them thinking, “Wow! If he is fantastic, wearing that nose hose thing, maybe I’m not so bad off after all…” And, you just might begin to think that it is true! Happened to me!


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  • Very well said!! I would rather be seen with a nose hose than stuck inside. The world has to much to offer.
  • Wow - I guess I've really been hiding this past month. I go out with my oxygen as I need it for walking, activities and at night. I do see people looking at me for wearing the oxygen but asking me why most of the time doesn't happen. I usually find when getting in an out of a car when driving is a pain because when getting out the car I usually get it caught or bang it around. It's better than stopping every few feet and catching your breathe like I did before. Some people would ask me about it others would just ignore it. I've only been using it less than 2 months so I am still shy about it. I know I need to use it. Thank-you, I didn't realize that I've been hiding my COPD too.
    • I find people are much more polite to me with my nose hose and try to look at it as if I were to see someone with one when I wasn't using one. Just go though life like you want to live it with the hose. You will figure out how to work with the car etc.
  • Great article, Jim! My mom had COPD, and we always encouraged (and helped her) to get out of the house with her oxygen. We went to movies, shopping, restaurants, zoos, and many other places. She was determined to continue doing what she wanted to do, and you are right - people all have their own issues and challenges, so we did not feel they were paying much undue attention to her. If anything, people were genuinely compassionate and wanted to help. She is sadly gone now, but keeping up with the activities she loved improved the last part of her life.
  • A great article and coincidentally quite timely for me. Yesterday when walking around town someone came straight up to me in the street and asked if I had COPD (another great thing about wearing 02 is that we are easily identified by other COPD'ers). We ended up talking for about ten minutes while he told me how he had been diagnosed almost a year ago when rushed into hospital barely able to breathe. He also explained that he was on LTOT: 'So where is it?' I asked, 'At home', says he! I had a long chat with him and tried to explain how important it was that he used it but I fear my advice was falling on deaf ears. I believe he lives locally so will be keeping an eye out for him whenever I'm in town from now on. I will also print out your wonderful article in the hope of passing it to him if I see him again.

    We are so lucky here in the UK to have free medical care - including the whole range of oxygen solutions to choose from. My own set up is a concentrator for home/overnight and LOX with two Helios Marathon flasks for outdoor use. It makes it all the more frustrating when I come across those who have all the equipment they need sat there unused at home!
  • I really thought that I was the only one embarrassed by my o2. I do wear it but I do want to hide in a corner. I wore it to my sisters wedding and my portable concentrator battery kept going dead and it was an out door ceremony so charging was a problem. I ended up sitting in the car charging more than enjoying the wedding. It felt to me like I was taking the attention off the wedding and put it on me which I didn't want.

    • I haven't used a portable oxygen concentrator yet, but I will be in a couple of weeks. I am going on a 4-5 day driving trip with my friend. I am renting a POC. But I think I will bring a few small tanks, just in case. I have been on 24/7 O2 for about 1-1/2 years. While I don't like it, I have never been embarrassed or ashamed to wear it in public...and I go out several times a week. Sometimes, I can sense that someone wants to ask WHY? and so I tell them briefly the circumstances that put me here. Although, I do have Emphysema and I did smoke (30 yrs), I am also a recovering smoker (25-1/2) years. The other reason that I am on oxygen is that I had Sepsis in 2014/2015 and one of the consequences was the bacteria attacked my lungs, making an already compromised situation that much worse. I am soon to be 70 and I am not ready to throw in the towel just yet...so I persevere.

    • Depending on your device they had bigger batteries. Problem is they are expensive. Don't know if my insurance will cover it. Think I'll call to find out for me. It is a problem but at least you could go to the wedding. No electrical cords in the area? We went the the beach this week and I felt real bad I couldn't go down. We must give up some stuff I guess. Glad I am hear to watch my grandchildren at the beach anyway.

  • Well said, my fellow COPD'er. I recently had an episode classified as "acute exacerbation of COPD which led to a hospital stay and discharged on 02 24/7. Yes, I was somewhat prideful leaving the hospital wearing the nose hose but it lasted less than 24 hours. I do not have a caregiver. The friends are not that available for a variety of reasons. I had to put pride aside and go with it. Took my first 02 tank and off to the grocery store. Once there, I lifted that tank into my cart and that was one of the more enjoyable food shopping experiences. So many people were helpful, compassionate and friendly, and sharing stories of those people in their life with COPD using 02.
    My perspective on the awareness of COPD is similar in many of the areas you brought out. COPD and lung disease, once again from my perspective, are diseases that are not communicative. so much less about it is in news reports because it's now new worthy....no epidemics. It appears, in my opinion, a silent disease primarily for the big stigma associated: smoking. Yet, we all know smoking is not always the primary cause but does grossly adds to the one whose body has been compromised from birth by their environment.
    Becoming VISIBLE is how we can make awareness to those we daily encounter as well as in our sphere of influence.

  • I find it very difficult to carry the portable o2 that I am renting. It is heavy and the batteries run out very fast. It tends to get tangled also. Very difficult to carry that heavy object and at least your purse
    Is there a better, lighter portable o2 that Medicare will cover?
    • Also wanted to add that it is very noisy and loud, there’s no way I could take it in to a movie theater
  • I know this may not be possible for some folks but this is what I did. I was on 02 before Medicare. My wife carried the insurance but I found it cheaper with copays and all to Buy my own equipment. I was at 17-19%. I bought a Simply Go and two Batteries-also works on 12 volt Dc so you can pier it that way while driving and on11 at home. I also bought an Invacare Homefil Unit and 3 tank sand a pressure regulator. I had 2 M9 tanks and 1 D tank, not as big as an E tank but lasted along time and was half the weight and size. After purchase they were mine—no copays no nothing and I was totally mobile up until I had my Double Lung Transplant😀. Yes that is correct— have any of you considered a transplant—you should. Basically if you are late stage 3 or stage 4 you may qualify. It has saved and changed my life in ways I did not imagine !!! I just completed a Rim to Rim hike of the Grand Canyon!! 23.tough mikes in 4days and 3 nights. Also walkers/jogged a 5K at th Nothe American Transplant Games. You folks should really consider this and look into it. If you have questions I am more than will to help. Message me and I will respond. As long as I am “not off the grid” if I am I will get back to you when I return,
    Regards and the best to all.
    • Paul, thank you for responding. I am fairly new to this (2 years) and have learned that my DR is not really forthcoming with information, either on my specific health, ways to help live with this and options for me.
      I have the large o2 machine that I rent, I am supposed to be 24/7. The rental place also gave me a portable unit with batteries etc. Are the machines you buy lighter to carry? What made you go with that specific model? I'm sorry but I will have to look up M9 tanks and D and E tanks to know exactly what you are talking about.
      Congrats on the lung transplant! I wondered why more people didn't get it, or if we weren't good candidates. Sounds like you are doing wonderful with it, wonderful!
  • I know this it is now way past when the article was written but the whole premise has not changed. November 2021 I was hospitalized and ended up needing o2 24/7. I did not want anyone to see me for around a month and after that going out was mainly to pick up groceries or food curbside or drive thru. Finally, my husband and I went out to eat inside a restaurant, since then I have not been embarrassed. However, there are time restrictions based on my portable tanks and concentrator. I got a conserving regulator for my portable tank (s) and bought a portable concentrator from an online store. We do not have any easily available locally because of covid. But if travelling our oxygen provider does have a travel department who will provide a concentrator at our destination and has travel portable concentrators that we can rent. I use a walker, so I normally do not carry whatever portable oxygen I use. I have invested in a multitude of backpacks to make carrying my portable tanks easier and also have a backpack for my portable concentrator.

    I am looking for bling for my canula, I know I have to wear it 24/7 so I may as well decorate it and have fun with it. So, if anyone knows where I can find bling, please let me know.
  • What a fun idea to consider decorating your cannula.

    I believe craft and/or fabric stores may have things you may decorate your cannula with. An important thing to remember is not to constrict the cannula in any manner and not to add things that may snag or get caught.