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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Rick | @rstel7272 | Sep 9, 2023

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.

yakkwak | @yakkwak | Sep 9, 2023

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

robinzemp | @robinzemp | Sep 9, 2023

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.

Rick | @rstel7272 | Sep 10, 2023

In reply to @yakkwak "Thanks Rick. Reason for the preference of continuous over pulsed? Was it distracting?" + (show)

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.

totty | @totty | Sep 13, 2023

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!