Very interesting....I seem to be one of them who does not need it....but SOB drives me nuts

Join the club LOL......97% even after exercise yet SOB all the time....sometimes even when sitting watching TV......

There is also the other side of the coin; those few of us who dont shouldnt need long-term oxygen therapy, especially in terms of the requirements and mechanisms outlined in the blog, yet are prescribed O2 24x7. I fall into that category.
At rest, sleeping, or doing mild activities my SpO2% is just fine (95-98). I am seldom SoB. However, suddenly while active, or even occasionally completely out-of-the-blue Ill become SoB and my SpO2% will drop like a stone. The reason is while I have emphysema I also have CHF thus a host of backend issues O2/CO2 transport between heart and lung aint working the way it should.
So I have oxygen available for the scary times else its a fast trip to the ER and an oxygen fix for reasons not fully understood. Having extra oxygen available 24x7 practically eliminates episodes, again for reasons not fully understood. My flow is kept close to minimum; 2 l/m with an occasional boost to 3 l/m.

We are all so different. The primary reason so many different morbidities are brought together under the single umbrella of COPD is because the treatment options are essentially identical the basic ABCs and Oxygen.

Slightly off topic, but I take heart in the fact that there are so many different explanations and treatment variations, and that is simply because I honestly feel that, perhaps while not a cure, an amazing treatment/drug/fix is just waiting out there to be discovered. Not in time for me, but definitively for others. I say that because in my 70 years in science Ive seen a ton mysteries suddenly resolved via discovery of a simple item resulting in a change in view. They all follow the same pattern a problem with a host of hypothesizes each of which explains part of the problem, but fail elsewhere, then bang a new view and suddenly a simple explanation that resolves everything. One example is Ulcers long considered a problem caused by diet and stress with a host of explanations and treatment options (some of which bordered on medieval torture. Smile.). Millions suffered for years. Now a simple antibiotic treatment manages Ulcers quite well.

Wow, interesting stuff. I wonder if pulmo drs ever explain this to their patients? Mine certainly didn't. In fact, when I asked him a bunch of questions he became quite aggro - even asked if I was after his job!!?!?!?! Any wonders why I told him to put his dang PLB demo's where the sun don't shine ... Grrrrrrr :-((. However, I did have a blood gas test (not my idea of fun!!!) but wasn't privy to the results.

Maybe, just possibly, or perhaps if it wasn't necessary to put me onto oxygen in the first place?????? I even wonder if oxygen @ 6 lmp 24/7 has done me more harm than good. I just find it more than coincidence that my eyes, hearing and short-term memory have deteriorated simultaneously ever since. Imagination?????

At rest WITH O2 I'm constantly SOB, though mild. But let me take a short walk to use the bathroom, my SOB hits the ceiling! At rest WITHOUT O2 for about 5 minutes, my pulse oximetre reading is +- 81, and after a short walk down the corridor it plummets down to +- 75. On the other hand, sometimes my SOB jumps sky high completely out of the blue while I'm watching TV ... if the programme was X-rated I'd understand. :-))))) ... but my O2 reading is good at 95-98. Recovery is long and painful. Weird or what?

Anyone similar? Any opinion or insight would be appreciated. Many thanks. Leonie xx

Yeah that's me too. My O2 levels are upper 90s but Sob and wheezing are almost a norm anymore.

Yes Leonie........even with fantastic high sats, i am always SOB...mild to gasping and it can come out of nowhere......Taking a shower which was daily n a pleasure is now something i need to psyche myself up for, so maybe down to 3 a week.....not showers but baths these days....

PLB is also become a natural way to breathe and don't need to even think about doing it....

I hate ABG...i have one every 3 months re-new drug trial that is supposed to eliminate weak oxygen carrying cells in the blood stream, so as to make the good ones more efficent.........plus it helps balance the PH in the blood as either way, too acid or alkyline is what contributes to my chronic pain.....

As i have hard to find,thin, rolling veins n arteries, poking around with the needle is not fun lol.....

I rarely get SOB as long as i "pace" myself, but I do have to wear 02 because my Sp02 drops fast the minute I move.

Low 02 doesn't cause me to be SOB, but it does cause me to get confused, dizzy, my legs get week, I feel faint and so forth.
I don't "feel" that until I get 80% or less so I have to depend on my 02 doing it's job & my checking it with my oximeter to make sure I stay over 90%.

Our wonderful Denny taught me the importance of not letting my Sp02 drop below 90%. his links & his explanation taught me how 02 affects all of my brain, organs, muscles etc.
As I live alone and I want to keep the ability to live independently I want to hold on to my brain, internal organs, eyes etc.for as long as I can.
So even though I don't experience the discomfort to SOB, I wear my 02 & I do my best to keep it over 90%.

btw; has anyone else noticed pain increase from low 02?
my dr & i have noticed that my 'controlled' chronic pain, gets bad right before i have an exacerbation.

Also= I wear 2LPM sitting, but I have to go as high as 6lpm when active...I end up wearing too low of 02 in the house because adjusting the concentrator every time i get up is a pain.
my travel tanks are actually nicer with the knob I can turn so easily to increase or decrease 02 as needed.

being sob sure takes its toll on you, I try not to go to fast to avoid it. mine stay 90 or so mostly when I am sob so don't need oxygen yet.

great article, thanks for sharing! I often get SOB & sometimes it happens when I'm only sitting trying to relax. my O2 sats rarely read less than 90% so I don't need oxygen therapy.

Interesting. Thank you for sharing. Normally, I am fine just sitting. Standing; mild exertion----cause my heart rate to climb to tachycardia; and my oxygen saturation drops to low 80's. I am on oxygen 24/7.
I am trying to understand the relationship to red blood cells. I have been diagnosed with anemia (the first time in my life). Apparently; anemia has a relationship to not having enough oxygen in the blood?

hi blueiris,
Do you turn up your 02 when you get up from sitting?
Our heart has to work harder if our 02 is low. (heart & lungs are a team)
Last spring I was waking up in the morning with racing pulse (tachycardia) and it was horrible, it made me feel so weak and lethargic. My 02 would be fine, but my pulse would be 135+
I had an in home sleep study done & it turned out that my 02 was dropping in my sleep even though I was wearing 2LPM 02.
My dr had me increase my 02 to 3LPM and i have not had that happen since. (hanko had a great article about heart & lungs about a year ago)

I found this article on anemia & 02. it says it can cause SOB, lethargy, heart palpatations etc. It also says being low on B vitamins can affect us (now i guess i know why my dr insists I take supplemental B vitamins)
http://www.nhs.uk/conditions/Anaemia-iron-deficiency-/Pages/Introduction.aspx

I assume since your dr found it, that he has you on a supplement?
be sure to eat all those dark colored fruits & vegi's too!
my thoughts and prayers are with you (((HUGS))))

Hi blue.....
Anemia also can occur if your red blood cells don't contain enough hemoglobin (HEE-muh-glow-bin). Hemoglobin is an iron-rich protein that gives blood its red color. This protein helps red blood cells carry oxygen from the lungs to the rest of the body.

If you have anemia, your body doesn't get enough oxygen-rich blood. As a result, you may feel tired or weak. You also may have other symptoms, such as shortness of breath, dizziness, or headaches.
..................................................................................................................

This is the basis that my trial is all about......By reducing the sick or non-performing oxygen carrying red cells, the theory is it enables the good ones to have more areato do their job better....

This as a result reduces exacerbations.....for me people, with not much surgerical options available because our lungs are so badly destroyed,stopping getting flare-up is very important....

............................................................................................................