COPD is constantly on my mind, too!

By munchkin47

2 min read

I am very lucky that my COPD isn’t as bad as most others on this forum but, despite that, I am constantly thinking about my breathing every minute of the day just about!

I feel quite guilty about it but I can't seem to stop myself!!

Reflecting on past "episodes"

For the last month I seem to have got worse (only slightly) as I am constantly out of breath but what I really worry about is when it might become so bad that I will eventually not be able to breathe, just like what happened to me in the dim and distant past on three occasions when I was 32 (I am now 73).

On the final occasion, I had no idea that that 'episode' was probably a warning sign of things to come (I was about 7,000ft. up a mountain in the Dolomites at the time!) I just couldn't understand why I could breathe IN but not OUT and I REALLY REALLY thought I was going to die then.

Very scary at the time!!

Finally getting a diagnosis

Inexplicably I had no more episodes like that until I was 70. When I began to find I was getting slightly out of breath when out walking. After about 6 months or so of trying to get my doctor to believe me that there was something wrong with my lungs, to my surprise, I was finally diagnosed with COPD and asthma, even though I had never smoked in my life!

Anyway, as I have not been allowed in the surgery for tests for over a year just about, due to Covid, I do not know just how much my lungs may have deteriorated… and it is bugging me not knowing!!

Keeping it to myself

As I said, these dodgy lungs of mine are constantly on my mind but I don't like to mention my problem to my husband as he would just tell me to sit down and rest which would not be good for me as I know I must keep on walking as much as I can. Sigh!

Hmmm… unless someone has the illness, he/she just can't imagine what it must be like so, for my husband who, I think might be suffering from Asperger's syndrome, it is a struggle for him to imagine what I am going through at times. I just accept that as a fact of life, that he doesn’t know how to empathise. Perhaps when I get really bad I might be more inclined to say something but for the time being, I just don't see the point.

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Leon Lebowitz, RRT Member
Hi <inline-mention username="munchkin47" user-id="2405263"/>, and thank you for sharing your story. Wow - that is quite a good run - to have experienced the 'episode' you described while being at a 7,000 foot elevation in Italy, when you were 32! That fact that you never had another episode like that until you were 70 years of age got me to thinking. Without any other episodes during all those years, my thought is the episode you did experience could have been triggered by the high elevation you were. You may be aware, that at higher elevations, the atmosphere 'thins out'. Since it is 'thinned out', there is measurable less oxygen available in the air one breathes. For some folks, this can create a dramatic (and unanticipated), significant difficulty for one's breathing. Is it possible this is what happened to you back then? I thought you might gain some additional insight from this article which focuses on this very subject matter - high altitude: <a href='https://copd.net/forums/oxygen-high-altitudes' target='_blank'>https://copd.net/forums/oxygen-high-altitudes</a>. I do hope you find it to be helpful in a practical way. Wishing you well, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
1. munchkin47 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Yeh, I had come to the same conclusion as you, that the atmosphere would have been thinner at that height, therefore, less oxygen. As I had never been higher than Ben Nevis in Scotland where I live before that climbing holiday, it never occurred to me that I would be affected by thinning atmosphere. I mean, I was 'supposedly' young and fit (Ha! Ha!) but that breathing 'episode' was a shocker to me! Oh, well, I somehow survived. Phew!
2. Leon Lebowitz, RRT Member
 <inline-mention username="munchkin47" user-id="2405263"/> Hi again, munchkin - thanks for your reply. I'm glad to hear you survived, too!!! So many 'young, healthy' people are caught off-guard when they experience high altitudes for the first time. It can be quite unsettling to suddenly have difficulty breathing when one has not had that experience before. I remember I visited Denver (the mile-high city), when I was much, much younger, and I was not a respiratory therapist yet, I just had asthma. I could not figure out why I became so short-winded, so quickly, when I went swimming, until my friend explained the effects of an elevated altitude. Only then did I understand why I also had to adjust the twin-carburetors of the car I had at the time. The car needed help 'breathing' too, with the thinner air! Best regards, Leon (site moderator COPD.net
munchkin47 Member
Thank you for the suggestion that altitude could have brought on my breathing attack. Yes, upon looking back I think you are probably right, that the lack of oxygen at 7,000 ft. may have had something to with my breathing problem. Until I was diagnosed with COPD/Asthma about 3 years ago I had never connected the two factors…that there wasn't enough oxygen in the atmosphere and having the beginnings of a lung problem….but now it all makes sense. When you are young you think you are immortal and imagine that you will never develop any serious illness so, at the time of the breathing attack 7,000 ft. up a mountain, such thoughts were furthest from my mind! I mean, I was a P.E. teacher and played sport so how could I possibly have such a condition!! 😏
1. eat2017 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> thank you so much for answering my question. I guess it’s a myth then. I’m not sure where I received this thought that barometric pressure affects our lungs.
2. Leon Lebowitz, RRT Member
 <inline-mention username="eat2017" user-id="2476559"/> Hi again, Liz - it's my pleasure! I wouldn't call it a myth (although it really doesn't matter, from my perspective), but rather more of a misunderstanding. Keep in mind that, as one ascends to higher altitudes (think of the 'mile high city' of Denver), the atmosphere does actually thin out. This may cause issues for folks who are sensitive to oxygen levels. You may want to look over this discussion, right here on <a href='https://copd.net' target='_blank'>COPD.net</a>, which focuses on oxygen and high altitudes: <a href='https://copd.net/forums/oxygen-high-altitudes' target='_blank'>https://copd.net/forums/oxygen-high-altitudes</a>. I think you'll find it interesting and informative to read. What do you think? Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
Beowulf Member
My entire life has been a struggle to be healthy and breathe properly. Born with severe asthma I nearly died of it on several occasions as a child. Only various therapies and my long suffering/advocate mother (and my athlete step father) helped me to survive, despite my doctors assuring her I would not survive my teens. Moving to Hawaii with its elevated humidity was greatly beneficial to me as well. I'm grateful my copd is not yet severe. I try to engage in exercises and heavy physical work nearly daily. At 71 I still hit the weights 5 times a week. Although I've sustained many injuries resulting from my irrationally exuberant athletics and power-bodybuilding over my lifetime, many of which required surgical treatments, I'm generally still reasonably healthy despite my tattered lungs. I'm quite strong and motivated to fight this progressive condition; it's what I've done my entire life...beat the long odds!
1. Carol Kirker Moderator
 You certainly have a fantastic attitude, which I believe is key in managing COPD. Be careful with extreme exercises, although it’s great you exercise regularly. It’s important. I found it interesting you said humidity helps you. Many have such a difficult time with it. It shows how differently this disease affects us all. Thank you for sharing your thoughts today! Carol (moderator)
tomboyer46 Member
My SPO numbers are at about92 when walking a short distance.I would have my oxygen set on 6 conserve and my tanks lasted a good while. BUT I was getting out of breath quickly. I thought it was my oxy level but Dr said I was not getting enough and my body has gotten used to it. He put me on the continuous setting. the yellow band tanks last only 1.5 hrs. as I have to have it on 6 lp. That certainly limits where I go. Running out is the major concern for me..I am asking the Dr if I can keep one of the two regulators so I may save the oxygen like when I am sitting or something like that. Any suggestions certainly appreciated. 
1. munchkin47 Member
 <inline-mention username="tomboyer46" user-id="4140736"/> It sounds ghastly what you have to put up with these days and I really feel for you. I wouldn’t wish this illness on my worst enemy! I am hoping that because I never smoked I might not deteriorate as fast as some other sufferers. Anyway, my best wishes to you. Barbara
eat2017 Member
I had the same experience in Denver when I was 26! I was just snow tubing since I didn’t know how to ski. I thought it was the cold air but perhaps it was the elevation instead. This was also the same year I completely passed out at the beach on Mother’s Day. I had eaten breakfast made by my two young boys that morning, and had plenty of hydration; but I walked from the beach to the boardwalk to the hotdog stand to get a soda and hotdog for my boys. And I remember darkness coming from my peripheral vision, the circle of darkness quickly closing in to complete blackness. I fell and hit my two front teeth clear down to the gum line on the metal edge of the hotdog cart. I came to remembering hearing my son ask if my mommy was going to die. (Broke my heart). I was walked to an air conditioned life saver station. Not thinking, after I felt fine and had some water, I drove home. I kept thinking about why this happened. So I went to the hospital. They did a bunch of test and couldn’t determine cause. Later after follow up with my dr. I guess they said I had low sugar and low oxygen. I had a PFT done soon after and that was when I was told I had mild COPD. Crazy right? Of course like many other young people I thought nothing much of it. Didn’t know anything about COPD then and didn’t learn about until I was 40 when I had lung cancer and moderate Copd. I didn’t stop smoking at age 26, because well, i was invincible right? I was young and didn’t know how this would affect me years later. The only thing I thought I knew was that it was something that affected people in their 80’s or so. So! I thought! Of course I was told I should quit smoking but I didn’t put the two together and was clueless. I was given no information about the disease. No internet ease of research. No knowledge at all, not even a brochure. Here I am now at 57 and stage 4! Lessons learned now for if I have a second life I guess. This was also the same year I somehow got exposed to Tb and had to take the INH regimen for 6 months. I traveled weekly for my job at the time so it could have been on an airplane or in one of the nursing homes I entered possibly for work. So much happened in 1990! I try to tell the young who smoke how it sneaks up on you. How the addiction is extremely hard to quit the longer they smoke, etc. A good talk I hope they are taking seriously. I’m blunt with them and ask if they wanted to be like me carrying around oxygen and still gasping to pull in their next breath. I try to paint a vivid and real picture for for them. Sorry this was so long and wordy! But I find it easier to write about things when something triggers my memory vividly like the conversation above with you and munchkin47. Thanks for all of your support on this site. It is very much appreciated!!
1. eat2017 Member
 <inline-mention username="munchkin47" user-id="2405263"/> it really does make you wonder doesn’t it! It also makes me wonder about the genetic factors that have been ignored until recently. Now <a href='https://copdgene.org' target='_blank' rel='noopener noreferrer ugc'>copdgene.org</a> is doing just that, studying all the common genetic factors among those with COPD. I am happy they are doing it. Of course my smoking basically turned on those genes or put some more solid dry wood onto the embers to create a bigger fire for me 😬 thank you for replying to my message. Best wishes to you as well!
2. SamanthaSarube Community Admin
 <inline-mention username="eat2017" user-id="2476559"/>, thank you for sharing your story! I appreciate you being so open with our community. What a scary episode to have so young and on Mother's Day! I think a lot of our community members would identify with not really taking COPD very seriously when they were younger. Wishing you a peaceful day. All the best, Sam S. (COPD.Net, Team Member).