New to Oxygen Supplementation - Questions

Posted by yakkwak @yakkwak, Sep 8, 2023

Greetings!
I'm a fellow bronchiectasis survivor. Seemingly impossible, a prior dance with MAC was successfully treated with a PICC line cocktail that included rifampin & three other meds. Did ok for few years, then began to again decline. Just finished a 30 treatment of inhaled (BID) gentamicin (as BCBS declined tobramycin). Just finished a week ago; seems ok rt. now. My oxygen SAT varies daily from 94 down to 85 at lowest, so oxygen supplementation has been prescribed. Does anyone know if one might get away with using a portable oxygen concentrator day and night until a big home unit could be purchased? My prescription's written to be the same for day and night. My coverage is terrible and think buying may be better in the long run than the co-pays, but purchasing all in one-hit is a lot.
So sorry others also have this miserable, miserable disease. Positive energy to all!
Signed,
Sick but Fashionable 🙂

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@liz440

I just learned something. I am in hospital with rhinovirus (LOL) aka common cold and mild Stephococsus (sp?) Aureus pneumonia and at first had a bit of supp oxygen. The doctors told me that with any kind of COPD you should keep your oxygen level to around 88 to 95 because otherwise you could get some kind of acidosis which would show up in blood gases and in blood tests that show anion levels etc. I never knew this before so you have to be very careful when Doctors just willy nilly put you on oxygen in the ER etc. Always carry your own 02 monitor so you can double check yourself. You might want to google this topic to read more about it. Has anyone else heard this?

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Have you had blood gas testing? And how painful is it?

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blood gas was a piece of cake. sharp stick and that was it. didn't bother me at all. Blood gasses were ok but that was before the big o2 in the nose thing...just on regular air.

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@liz440

Right thanks that is a detail I did not add but mostly I was talking about overuse in the ER when you are lying there on a stretcher! I was not aware that you should likely not go above 95 on supplemental o2 too much and that 88 is not so bad if you have COPD because you could end up with too much of co2 or o2 or something if you go over the 95 . I am still not too clear on this. I thought 99 on 02 was good and that turns out to be wrong for copd people it seems. I am in hospital now and I monitor it myself with my pulse ox thing and haven't needed any 02 at all because always in the 91-94 range resting or moving and middle of night when nurse checks

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I'd ask your pulmonologist about this 95%

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@liz440

Right thanks that is a detail I did not add but mostly I was talking about overuse in the ER when you are lying there on a stretcher! I was not aware that you should likely not go above 95 on supplemental o2 too much and that 88 is not so bad if you have COPD because you could end up with too much of co2 or o2 or something if you go over the 95 . I am still not too clear on this. I thought 99 on 02 was good and that turns out to be wrong for copd people it seems. I am in hospital now and I monitor it myself with my pulse ox thing and haven't needed any 02 at all because always in the 91-94 range resting or moving and middle of night when nurse checks

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Inappropriate oxygen therapy in patients with COPD can possibly cause respiratory depression. If you have COPD and use oxygen be sure to speak with your pulmonologist if you have not already so you will understand correct usage for your situation.

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@liz440

I just learned something. I am in hospital with rhinovirus (LOL) aka common cold and mild Stephococsus (sp?) Aureus pneumonia and at first had a bit of supp oxygen. The doctors told me that with any kind of COPD you should keep your oxygen level to around 88 to 95 because otherwise you could get some kind of acidosis which would show up in blood gases and in blood tests that show anion levels etc. I never knew this before so you have to be very careful when Doctors just willy nilly put you on oxygen in the ER etc. Always carry your own 02 monitor so you can double check yourself. You might want to google this topic to read more about it. Has anyone else heard this?

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Hi, @liz440,
I am reading your old post, you mentioned that you had mild Staphylococcus Aureus pneumonia. Did you get rid of the staph? How was you treated? My sputum test is constantly showing +1 Staphylococcus Aureu. My pulmonologist said I might have colonization, I wonder how you got rid of it? I think with this infection, it affects the oxygen level. But every time I am in the doctor's office, my oxygen is normal, lowest is 95. But at home it is low. No, it is not what you think. My oximeter works right on other people.

Ling

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@rstel7272

I have used nocturnal o2 for 5 years and did buy my own inogen at home unit due to the same insurance hassles you described. I recently turned 65 so Medicare pays rental on a home unit and a portable. The portable is pulsed and has a 4 hour battery time so I use it sparingly. I prefer the Continuous vs the Pulsed when possible.

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Hi Rick,
How did your doctor decide that you need oxygen support? Based on the oximeter test in the office or other tests? I think it is important to have it, in case you need it. It is really scary when it gets low.
I seem to remember one of your old posts after you moved to your new location. Your oxygen level is normal. Is it still true?

Thanks!

Ling

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@wangling

Hi Rick,
How did your doctor decide that you need oxygen support? Based on the oximeter test in the office or other tests? I think it is important to have it, in case you need it. It is really scary when it gets low.
I seem to remember one of your old posts after you moved to your new location. Your oxygen level is normal. Is it still true?

Thanks!

Ling

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I have learned a lot about oxygen supplementation since being put on it but too much to write here. Basically if you need oxygen you should use it! But any good pulmonologist would not put you on it if you do not need it. They do a test to determine if you need oxygen before it can be approved and covered by medicare. My pulmo said if your oxygen is 88 or less for 18 hours out of the day then you need it. But that is a generalization and depends on your whole situation. My O2 levels dropped so low (in the 60's!) it was crystal clear I had to have Oxygen but it is not always so clear. So again you need to check with a good pulmonologist and in our case one who specializes in Bronchiectasis. I do not know about occasional use of it as needed or if that is even done but probably an option??

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Ling this is a great lung resource and covers every topic you can think of including Oxygen use: https://pulmonarywellness.org/oxygen/

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@irenea8

Ling this is a great lung resource and covers every topic you can think of including Oxygen use: https://pulmonarywellness.org/oxygen/

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Thank you, irenea!

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@wangling

Hi Rick,
How did your doctor decide that you need oxygen support? Based on the oximeter test in the office or other tests? I think it is important to have it, in case you need it. It is really scary when it gets low.
I seem to remember one of your old posts after you moved to your new location. Your oxygen level is normal. Is it still true?

Thanks!

Ling

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2 tests. A nocturnal oxygen test and the 6 minute walk test are the standards. My spo2 is generally around 5% higher at sea level vs Denver, CO. I have a very low nocturnal heart rate which keeps my spo2 low.

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