Anyone Experienced W/COPD Or LTOT 24/7 - Shortness-of-Breath?

[Lore]

1st part of this question: Is there anyone here who has 1st hand experience being on oxygen 24/7 (LTOT= Long Term Oxygen Therapy)? Specifically with COPD (Chronic Obstructive Pulmonary Disease) or shortness-of-breath? Persons who have had the "experience" of what it "feels like" to be short-of-breath; trying to exercise and be short-of-breath; trying to walk 20-40 steps and be short-of-breath "while on oxygen"; the difference in the "feeling" of being out-of-breath from exercise exertion vs being out of breath from bronchoconstriction, vs having or creating "air hunger", etc., I think this is part 1 of one of my questions.
I need help to figure this out. This doesn't make sense to me, what am I missing?

I have been diagnosed with COPD. My understanding is, COPD persons ARE CO2 retainers. If this is correct, and if I understand "pursed lip breathing" correctly, wouldn't this cause one to "retain more CO2", exhale slower, relieves bronchoconstriction, etc.? Isn't this what we want???? So if my thinking is correct, would it be more accurate to say that COPD causes hyperventilation when one gets up to walk and ones breathing increases, bronchoconstriction occurs, it becomes necessary to start "purse breathing", etc.? I am confused!​

I'm going to post this for now, I'm having heart issues again .. brb

 

[GAF]

Yes. Sadly, a lot of experience. But I don't understand what questions you are asking

 

[Lore]

It's late and I've had a hard day, can we talk tomorrow?

 

[Xisca]

I think she wants to understand the cause, because it can seem illogical and contradictory with Buteyko's method. I suppose the doctors did not give any satisfactory explanation, only diagnosis of the obvious symtoms.
Lore, what were the most early signs you can remember you had in your lungs, even much before any diagnosis?
How old are you and have you ever been a smoker?
Were you prone to bronchitis in your early years?
So sorry about this happenning, and even more revolting when no sufficient explanation is given.

 

[Lore]

Yes. Sadly, a lot of experience. But I don't understand what questions you are asking

Thank you for responding GAF & Xisca. Please bear with me, sometimes I'm not sure what questions to ask (and I ramble), except to say, I need help to "brainstorm" and think through my thoughts to an acceptable conclusion. I'm not a "sheeple", I don't blindly follow something/someone "just because they said so." I need to understand things.

At times, some of my questions require a person(s) who has/had "experienced 1st hand" vs learning it out of a textbook or viewing it under a microscope or make a reference from a book or article. I think we can agree there is a difference so I don't need to elaborate (do I?).
Later scientific minds, textbooks, microscope, blood work, reference material, etc., all come into play for research. I've been trying to research and educate myself for 4 years. I am not a well-educated person so it is very, very slow going, I've had no one to help me learn, ask questions with or brainstorm with. There is conflicting information in the medical journals, who can I believe or trust? If I want to speak with a doctor, I need a minimum of $200 for the first 10 minutes. hogwash!

I need help to understand what's normal and what's not, what am I feeling, is there something else going on here, what can be done, how can I implement an exercise program, will I ever be able to get off oxygen, etc. I don't want the "canned responses" by "sheeple" found in every COPD forum, blog, hospital website or "you should seek professional advice or a medical professional (with all due respect)", I'm looking for solutions here, ideas, thinking outside of the box, and I am offering myself up as a test subject (to a degree ).

1. First, I strongly feel the body can heal itself. Obviously, one needs to pursue knowledge, understanding, wisdom and like this forum says, "Perceive, think and act".
2. I don't use any pharmaceutical medication other than oxygen 24/7. I want to talk about this.
3. I live a very, very sedentary lifestyle. I have a "cellerciser (rebounder)" to keep my lymphatic fluid moving. I can hardly move without my O2 dropping, becoming breathless even with O2. I'll need to elaborate different circumstances. Don't get me wrong, I do move in spite of my O2 dropping down low.
4. We have western medicine saying people with COPD retain CO2 in their lungs; the alveolar is damaged; unrepairable, and there is a problem with the gas exchange, lack of oxygen - "here, you need O2". Yet, they are instructing us to use "pursed lip breathing" to help us breathe when we are short-of-breath. So I want to talk about this.
5. I've read medical reports that say "we don't know a lot about xyz ..." yet they're diagnosing lung/heart problems. I've read "if you don't use your alveolar they will shrink and cause respiratory disease." And other contradicting information.
6. Because someone has said "you are sick" therefore, my mind and body "thinks I'm sick or parts of me but not others?" (sub-conscious mind, psychosomatic, etc.)
7. When I'm sitting down, on oxygen, my breathing/lungs feel great; fresh; clear; deep; full; diaphragmatic; I would never know anything was wrong with me. I "feel" like I could run a marathon. I was on 4L of O2 in 2013, now I am down to 1-1.5L of O2 (after 4 yrs). My heart rate was in the 80's, now 62-68 most of the time. My breaths per minute average 8-10 now, it used to be much, much higher. My husband says my breathing while sleeping is so shallow he doesn't even know if I'm breathing. We'll need to talk about the oximeter, saturation ranges.
8. When I stand up my heart rate will go from 64 to 90+ bmp, just standing up ... then within 30 sec. or so, balance out to about 80-88 bmp. If my oxygen saturation reading is 92-94/64, I stand up and walk 20-40 steps slowly (28 sec. of walking) - my oxygen will drop into the low 70's- 65/90+ - 114). I want to talk about this.
9. I want to talk about diet, exercise and oxygen, etc. Exercise and reducing my heart rate.
10. I'm thinking I have multiple issues that are not being considered which all relate to oxygen, usage and saturation, pH, CO2 balance etc., such as hypothyroidism, hypoglycemia, low iron, digestion, and now it looks like my heart is acting up, etc. Heck, isn't this the basis of being alive? So how can a doctor nail down COPD as being the only "hypoxic condition" for my case?????? ... because I smoked - that's how!
11. I need to talk about lactic acid, CO2, "pursed lip breathing" or is it something else?
12. And I'm sure I have many more questions.

I have fixed my panic attacks, depression, hyperventilation, sympathetic nerve/vagus nerve issue I want to share in another thread. I still have the CO2/hyperventilation issue when my O2 goes into the low 70's , which I assume should be normal (working on this).

I was wondering if I should use the "Ask for help - Specific User" section of this forum? I have a lot of questions and I am looking for "out of the box thinking" and "brainstorming". What do you think? Then maybe we can use different threads but keep my issues or COPD issues together? It looks like this COPD may also be COPD/Heart meaning, COPD causes heart conditions (among possible other issues).

That's a bit of what's on my mind, thoughts?

 

[Trix]

@Lore have you investigated Vitamin B1 Thiamine or the version that crosses the BBB Allithiamine?

Another thing that helps oxygenate your tissues is structured water and of course, light. Are you able to get in the sun?

 

[Lore]

@Lore have you investigated Vitamin B1 Thiamine or the version that crosses the BBB Allithiamine?

Another thing that helps oxygenate your tissues is structured water and of course, light. Are you able to get in the sun?

Sun? Oh yes, sunshine 365/yr. 24/7 except for a rain shower here and there. "Structured water", I don't know what this is. Ozonated water?

As for references to the nutrients, I haven't specifically tried them. I do take a B100 (complex) & B6 on occasion. Why are you making reference to the "version that crosses the BBB Allithiamine"? Why would this be important? Thanks for the suggestions. Tell me more :)

Edited: I'll research this throughout this site. Thanks

 

[Xisca]

Let's see if some one has the same as you, because for first hand....
Thanks for having shared about dentistry and offer what you had 1st hand yourself!

I have fixed my panic attacks, depression, hyperventilation, sympathetic nerve/vagus nerve issue I want to share in another thread.

You will have me on this thread for sure!! (yeees you all members who know me, I know you are laughing!)

I would suggest you look at the subforums for chosing your other targeted questions. Also an idea as you want to undersand how you got there apart from smoking, you might share the other issues you had before getting to this specific lung problem. I'm doing this for my digestive issues for example, and trying to connect with the other things I suffered. We are often a sort of story like who is the first between egg and hen...

 

[Lore]

You will have me on this thread for sure!! (yeees you all members who know me, I know you are laughing!)

Are you saying you are interested? you'll love it! I will post in that thread when I find it! Simple.

Also an idea as you want to undersand how you got there apart from smoking, you might share the other issues you had before getting to this specific lung problem. I'm doing this for my digestive issues for example, and trying to connect with the other things I suffered. We are often a sort of story like who is the first between egg and hen...

I will be posting to your post earlier, yes .. I will tell the "rest of the story" (How I got to where I am.) Thanks

In the meantime, if anyone has any comments to parts of my earlier comment, I'm interested in your thoughts or suggestions.

I was wondering if I should use the "Ask for help - Specific User" section of this forum? I have a lot of questions and I am looking for "out of the box thinking" and "brainstorming". What do you think? Then maybe we can use different threads but keep my issues or COPD issues together? It looks like this COPD may also be COPD/Heart meaning, COPD causes heart conditions (among possible other issues).​

 

[Xisca]

Are you saying you are interested? you'll love it! I will post in that thread when I find it! Simple.

I mean I will answer to your topic when you will make it!
As you said you solve the problem, you do not want help, so I suggest this forum
Mind, Sleep, Stress

Then, for your personal story, why not make a log?
Logs
and then later on you note how you are doing...

Then you will see what specific questions need a specific topic somewhere else...

 

[Lore]

Sorry, I've already posted T.E.N.S. For Depression, Panic Attacks, Anxiety under Mental. Maybe someone can move it or I can re-write this post. Let me know.

 

[Trix]

Sun? Oh yes, sunshine 365/yr. 24/7 except for a rain shower here and there. "Structured water", I don't know what this is. Ozonated water?

As for references to the nutrients, I haven't specifically tried them. I do take a B100 (complex) & B6 on occasion. Why are you making reference to the "version that crosses the BBB Allithiamine"? Why would this be important? Thanks for the suggestions. Tell me more :)

Edited: I'll research this throughout this site. Thanks

@Lore Allithiamine is an activated form of B1, which crosses the blood brain barrier. Sometimes when the body is not working efficiently, nutrients are not absorbed and our transketolase system can be blocked. Allithiamine would bypass the block.

Gerald Pollack writes about water and so does Thomas Cowan, MD. Dr Cowan wrote the book 'Human Heart Cosmic Heart' and this link might help you understand better. Human Heart, Cosmic Heart

I have read that drinking structured water will alleviate COPD. Sorry I do not have a reference for it....I think it was an Italian study.

 

[Lore]

@Lore Allithiamine is an activated form of B1, which crosses the blood brain barrier. Sometimes when the body is not working efficiently, nutrients are not absorbed and our transketolase system can be blocked. Allithiamine would bypass the block.

Gerald Pollack writes about water and so does Thomas Cowan, MD. Dr Cowan wrote the book 'Human Heart Cosmic Heart' and this link might help you understand better. Human Heart, Cosmic Heart

I have read that drinking structured water will alleviate COPD. Sorry I do not have a reference for it....I think it was an Italian study.

Thank you for taking the time to respond, I'll see what I can find. Any idea what "structured water" is? I've never heard the term.

Update: Googled, found info. Thanks

 

[yerrag]

Lore, what is pursed lip breathing? Is it the same thing as breathing with your mouth closed?

Also, I'm having understanding that COPD sufferers are CO2 retainers. Does that mean there is too much CO2 in your blood? What is your arterial pCO2 and bicarbonate readings?

Also, since you are on oxygen, I just wonder if it would help to switch to using carbogen, where what you breath in is oxygen mixed with some carbon dioxide ranging from 3 to 7%. You may not have come across its use, as that's really not available in a conventional medicine context.

I don't know much about the heart and the lungs on a micro level, but I do understand that how well blood is delivered to the cells throughout the body depends, among other things, on the amount of carbon dioxide in your blood. If you have blood sugar control problems, or are hypothyroid, your metabolism (or production of energy) may be inefficient, and an inefficient metabolism produces too little carbon dioxide as a by-product . The lack of carbon dioxide in your blood makes it difficult for your blood to release oxygen to the cells. This poor oxygenation could contribute to difficulty in breathing.

At this point, I want to explain to you that the oximeter oxygen saturation reading could be a misleading metric when you think that at a value ranging from 93-100 you are getting excellent oxygenation. This is what you see when you're on oxygen, and you think you're body is getting optimal oxygen into the cells. No, what it says is that your blood is carrying a lot of oxygen. It does not say it's delivering the oxygen to the cells at all. In another thread, I had explained that as a bus with a full load of passengers unable to let its passengers deboard at the destination. A full bus does not indicate its passengers are reaching its destination.

Another cause of poor oxygenation, which I personally experienced, is when there is mercury toxicity. Mercury displaces any of the four sites in the hemoglobin molecule in the red blood cell. If two of the sites, for example, are carrying mercury, it can no longer carry oxygen. When I ran before, I always ran out of breath, and I always thought I didn't practice enough. It was only after I had mercury chelation, and had it removed, that I experienced the feeling of endurance. I didn't even train, and I could run five times the distance before I would run out of breath.

I'm learning a lot more now about breathing as I now take care of my mom in the hospital. She not only had difficulty breathing, with labored breathing reaching 60 bpm, she also had a very high heart rate of 150 bpm, with arrhythmia. I did what I thought would be helpful without little risk of harm, and had bag breathing done on her. After a few days of bag breathing, at just 2-3 sessions of an hour each, she first did away with her high heart rate, then her arrhythmia, and now her breathing rate has gone down to 24 asleep, and around 40 awake. It still needs work at that rate of breathing, but I'll continue with the bag breathing and see what happens next. The cardio doctor tried to allay my concern, telling me he isn't worried as his mom's breathing rate is just as high as my mom's. That got me more worried though, because I know he's a doctor, and he can't do his mom right with her breathing, and he's fine with it?

I also have a problem with the doctor attending to my mom, who keeps her on nebulization 3x a day with duavent which is a combination of salbutamol with some other drug. She tells me it's because she can hear harshness with my mom's breathing. Yet I don't hear it, and my hearing isn't bad. And it couldn't be because she heard it using a stethoscope, as she isn't using it on my mom. I have a gnawing feeling that until we leave the hospital, I'll be battling this high breathing rate problem coming from the nebulization. Every time its used, my mom's breathing turns to the use of the mouth. Something wrong. Mouth breathing isn't healthy. It doesn't retain enough CO2. We breathe through the nose, we eat and drink with our mouth. My point here is that you have to question the basis for the treatment being given to you. For all you know, it may just end up making you sicker, and you may up depending on a cocktail of prescription drugs.

It's good you are asking around from outside the normal channels. I hope more people can chime in to offer their insights and help out of your situation.

 

[Lore]

Thank you all for your responses, I will respond soon, there is a lot to say. In the meantime,

Another cause of poor oxygenation, which I personally experienced, is when there is mercury toxicity. Mercury displaces any of the four sites in the hemoglobin molecule in the red blood cell. If two of the sites, for example, are carrying mercury, it can no longer carry oxygen. When I ran before, I always ran out of breath, and I always thought I didn't practice enough. It was only after I had mercury chelation, and had it removed, that I experienced the feeling of endurance. I didn't even train, and I could run five times the distance before I would run out of breath.

@yerrag, what was your "mercury chelation therapy"? Another area (alternative) I'm having in trusting people with solutions. Thanks

 

[Lore]

@Lore

Gerald Pollack writes about water and so does Thomas Cowan, MD. Dr Cowan wrote the book 'Human Heart Cosmic Heart' and this link might help you understand better. Human Heart, Cosmic Heart

I have read that drinking structured water will alleviate COPD. Sorry I do not have a reference for it....I think it was an Italian study.

Forgive me everyone for not replying earlier, however, we had to buy a house and put my health issues on hold. Now that we have this discission completed, I can get back to my health.

I'm trying to get through all the posts, in the meantime, Trix, I wanted to thank you sincerely, for this reference. Within the first 4 pages, I can relate! This brought to mind my childhood and yes, I can see that my illness started way back to my youth. How profound is this! I will continue to read this book and make additional posts later as it relates to this topic, in the meantime, this leads me to Xisca's post:

Lore, what were the most early signs you can remember you had in your lungs, even much before any diagnosis?
How old are you and have you ever been a smoker?
Were you prone to bronchitis in your early years?
So sorry about this happenning, and even more revolting when no sufficient explanation is given.

Xisca, thank you for your response and your sympathy realizing I had not been given sufficient explanation let alone, continued therapies or guidance with my illness.

This post was to say thank you to everyone and apologize for not being responsive to your kindness. I have so much to say in response, bear with me, I'll try to get to them as soon as I can. I have also been trying to read more of the website and comprehend the posts. I'll be back.

 

[Xisca]

"retain more CO2", exhale slower, relieves bronchoconstriction, etc.? Isn't this what we want???? So if my thinking is correct, would it be more accurate to say that COPD causes hyperventilation when one gets up to walk and ones breathing increases, bronchoconstriction occurs, it becomes necessary to start "purse breathing", etc.? I am confused!

I have found out... Buteyko breathing is one case: for people who lack co2, but some have an excess! In that case, it is better to use holotropic breathing. Wif Hof. As we have different needs during the day, fast breathing to wake up and exercise, slow breathing to cool down....
And in all cases I prefer to use deep breathing with a pause after exhale, so you can dose the co2 you want, and most of all, it gives time to the gaz exchanges in the lungs!
There are more than 1 breathing type, and reduce to Buteyko is a mistake same as reducing to any other one way oriented breathing, or eating.... We all have different amount of co2 and different compensation with bicarb, and different pH within the narrow range of life, there is still possibilities for variations....

 

[Blossom]

@Lore this might help with your increased oxygen needs with exertion.
Oxymizer ® Disposable Oxygen Conserver | Drive Medical

 

[Blossom]

I also thought I would mention that pursed lip breathing if done in the following manner should help you get air deep enough into the lungs where air exchange occurs and also help you release some of the trapped air. Shallow breaths don't go much beyond the large airways like the trachea, bronchi and bronchioles which lack air sacs (alveoli) and is no big deal in healthy lungs because there is a functional reserve capacity . In the emphysema type of COPD shallow breathing can often worsen shortness of breath.
Here is the pursed lip method I've used in pulmonary rehab.
1. Breathe in slowly and deeply through your nose as if you are smelling flowers.
2. Exhale through pursed lips as if you are blowing out a candle (attempt to exhale for as long as it is comfortable).
3. Repeat