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?
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!