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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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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Thanks Rick. Reason for the preference of continuous over pulsed? Was it distracting?

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Pulse vs continuous: Pulse does not give me a sufficient amount of oxygen. I can sit perfectly still with no movement on pulse, but to do anything else I need continuous flow. I’m on 2L at rest and 8-10L on exertion. The numbers on the POC are settings, not liters. The highest setting on my Inogen 5 puts out less than 2 LPM.

I’ve also been told one should not sleep on a pulse setting as your breathing slows during sleep and it may not be enough to keep you oxygenated.

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@yakkwak

Thanks Rick. Reason for the preference of continuous over pulsed? Was it distracting?

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You kind have to time your breathing to the pulses, but it's the pulsing that allows battery operation. Home unit for home, POC for on the go. I even take my POC to the golf course.

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Make sure you have a definitive understanding of how increased oxygen needs will be covered. Inogen’s portable concentrator was the first my spouse requested and he was so pleased to be off cylinders and a pull cart! 33 months later the needs have drastically increased and he is bound by contract between Inogen and Medicare. Medicare will only pay for a total of 36 months but patient is not eligible for further assistance until after five years. Makes no sense to us nor was it explained. Fortunately my spouse can cover the costs of increased oxygen concentrator and emergency cylinders but getting this arranged has taken many hands of assistance through his pulmonologist at MUSC and a long time frame. Ask a lot of questions!

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@robinzemp

Pulse vs continuous: Pulse does not give me a sufficient amount of oxygen. I can sit perfectly still with no movement on pulse, but to do anything else I need continuous flow. I’m on 2L at rest and 8-10L on exertion. The numbers on the POC are settings, not liters. The highest setting on my Inogen 5 puts out less than 2 LPM.

I’ve also been told one should not sleep on a pulse setting as your breathing slows during sleep and it may not be enough to keep you oxygenated.

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Question?.
Why do some patients only need 4-5 hours oxygen per day and others need more?

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For me, my deep sleep heart rate drops to 45 bpm and lower. With my 40% lung capacity, 1 liter keeps my spo2 in the 90's

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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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88-95 sounds pretty vague. There are 3 categories of spo2 levels: at rest, nocturnal and exertion. Any of the 3 below 88 is what is needed for insurance approval.

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@rstel7272

88-95 sounds pretty vague. There are 3 categories of spo2 levels: at rest, nocturnal and exertion. Any of the 3 below 88 is what is needed for insurance approval.

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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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