MDS and anemia: Oxygen question

[Chris Ballmer]

I have been diagnosed with MDS and have low red white and platelets… and feel the basic symptoms of fatigue so far. However, I have lots of episodes of ‘heavy breathing’ in effect needing to take very long deep breaths in order to feel like I’m getting enough air.

Does anyone know anything about this symptom and what can I do to alleviate it without any medication/pharma?

I thought about using Oxygen tank and more oxygen intake, however, in all my reading I have not found anyone talking about this to help. Is it a matter of not having enough and ‘working’ red blood cells which prohibits any ‘more’ oxygen from being used in my blood? I’ll keep researching anyway…

[Allan Romriell]

Chris,
Saw your question in the other thread and figured I would answer it here. My MDS version is RS which primarily effects the red blood cells and hemoglobin so one of the few symptoms I have is fatigue and shortness of breath. I mainly experience shortness of breathe when exerting myself and conclude that it is due to less oxygen due to fewer red blood cells to carry it. I have not tried oxygen, but I don’t get to the point of feeling faint just winded and I sit down and things return to normal in a few minutes. I would think that oxygen would help in that it would allow what red cells there are to carry maximum available. I would be interested if any one has tried this as well. Its not something I had thought of until your question so thank you for asking it.

[Theresa Drzewiecki]

My problem is my HGB gets very low and I need transfusions. I can tell when my HGB is going down because of how short of breath I get.

[Edward Bond]

I’ve had MDS for 15 years, been on Hydrea for 10 years, recently the shortness of breath and dizziness upon any exertion has been unbearable. I asked my doctor for oxygen and she informed me that oxygen would only help if I had a lung condition. Being my lungs are operating fine she would not prescribe oxygen. I received my first two units of red blood on Saturday 4/21/18, my red count was at 6.8. I’m starting to feel a little better today, but shortness of breath is still an issue. Let me know how it works out if you try the oxygen.

[Chris Ballmer]

My take is that without more healthy red blood cells (which we have Epo and others) for, more oxygen will probably be wasted. Just because it’s not been done or is not something announced or coming up a lot on the websites about MDS doesn’t mean it couldn’t help. I guess I’m not there yet. My brother has sleep apnea, and he uses an oxygen concentrator every night to keep him from passing out, so I guess there is some use for forcing Oxygen when it’s not getting in. However, logically he has good red blood cells and needs oxygen because he’s choking out the air getting in his mouth. We have oxygen coming in, but at the red blood cell there is no transfer of that good oxygen to be used in our muscles, organs, brain, etc. The broken red blood cells need to be corrected, eliminated, and regularly functioning ones introduced. I don’t suspect this is rocket science, though how DNA and our bodies work is a bit of a mystery to mankind… not unresearched… but if we know more and more, we can then invent a fix…a way for our intelligent body to help itself, rather than short out and fail. We’re trying.

[Beth Stanaland]

I noticed shortness of breath when my hemoglobin dropped to 8.9. My doctor is going to increase the dose of my Aranesp injections and hopefully that will help to raise the Hgb

[Allan Romriell]

I guess that is a question we should all ask our Doctors to see what they say. I can see without proper functioning red blood cells you can’t get enough oxygen, just wondering if the supply is increased if it would help the available cells work at maximum efficiency.

[Chris Ballmer]

My doctor seemed to think an oxygen concentrator wouldn’t add much to the breathing experience.

[alicia heflan]

Why the oxygen concentrator wouldn’t add much breathing, and which doctor is asking you this thing?

[Myrna Miller]

My husband uses oxygen at night and does sleep better, he has also used it during a walk and did not get so winded.

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