Supplemental Oxygen

Posted by Melissa Nelson @melissa08, Sep 2 4:47am

Does it work?
My husband Bruce has been off the 3 MAC antibiotics and Arikayce for 4 weeks following almost a year of treatment. Side effects were horrible but appetite loss, brain fog and G.I. issues have greatly diminished with the break.
The only thing that remains is a crippling shortness of breath. He can only walk a few steps before he is overcome with SOB.
His ID/Pulmonologist has suggested supplemental oxygen if his levels go below 88. The lowest he gets to on the finger oximeter is 89-90 before crashing.
He has Bronchiectasis and cavitary MAC, the latter of which may have resolved based on 8 negative cultures.
He is due for a lung function test but is unable to physically get to the respiratory clinic at Johns Hopkins because of SOB.
He does nebulize twice a day with Albuterol and 7% saline followed by an Aerobika round which clears his lungs very well.
For those who are using or have used supplemental oxygen, what has your experience been? Is it effective?
If Bruce is able to get supplemental oxygen it would be helpful to know that it may give him some mobility and resolve some if not all of his SOB issues.
Thanks much for all the knowledge and education you've added to our understanding of MAC and Bronchiectasis.
Melissa

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@melissa08 I am sorry to hear that stopping the antibiotics wasn't enough to help Bruce feel better. I have not been on supplemental O2, but there are some here like @windwalker (Teri) who have had the experience. Also, we just lost a dear family member, from another disease, who was able to continue participating in life by using oxygen as needed. Without it, she was far stuck in her recliner, and much less alert.

We used to make my husband's best friend, who had COPD, put on his oxygen was 91-92% because we all knew a crash was coming. Besides, his conversations stopped making sense at that level – his brain wasn't getting enough oxygen.

I will tell you that when my O2 is below 93%, I have a very hard time moving around. At 89-90%, I am sure Bruce's entire body is feeling the effects. When added to the damage in his lungs, and his deconditioning from being ill for so long, the inability to get around is not unusual.

Have you explained to the doctor that Bruce cannot even come in for necessary care in his current state? You might need to be the squeaky wheel to get help for him. I know you are his fabulous advocate and caregiver, so you can do it!

Let me know if you are able to get him the oxygen order, and whether it helps.
Sue

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I've been on home oxygen since contracting Covid pneumonia back in June which resulted in blood clots. I have a home oxygen generator with extra long tubing on nasal canula, and I also have portable oxygen tanks that I use when I need to leave the house for appointments (they last about 1.5-2 hours, depending on how much oxygen is needed). My insurance covered the majority – I have to pay a maintenance fee of $14/month. I call when the portable tanks are empty and they send a delivery truck out, usually within 24 hours, to bring me new tanks (I have 2). It keeps my O2 sats at 97% or higher. If I go without it and I'm not "resting", my sats will drop into the 80's. It is a pain to have to drag the plastic tubing around, but definitely helps me be able to get around without passing out.

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@sueinmn

@melissa08 I am sorry to hear that stopping the antibiotics wasn't enough to help Bruce feel better. I have not been on supplemental O2, but there are some here like @windwalker (Teri) who have had the experience. Also, we just lost a dear family member, from another disease, who was able to continue participating in life by using oxygen as needed. Without it, she was far stuck in her recliner, and much less alert.

We used to make my husband's best friend, who had COPD, put on his oxygen was 91-92% because we all knew a crash was coming. Besides, his conversations stopped making sense at that level – his brain wasn't getting enough oxygen.

I will tell you that when my O2 is below 93%, I have a very hard time moving around. At 89-90%, I am sure Bruce's entire body is feeling the effects. When added to the damage in his lungs, and his deconditioning from being ill for so long, the inability to get around is not unusual.

Have you explained to the doctor that Bruce cannot even come in for necessary care in his current state? You might need to be the squeaky wheel to get help for him. I know you are his fabulous advocate and caregiver, so you can do it!

Let me know if you are able to get him the oxygen order, and whether it helps.
Sue

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Thanks for your note, Sue.
It is, as usual, extremely helpful and informative.
It does sound like supplemental oxygen would benefit Bruce, if we can get it for him.
His ID/pulmonologist is supportive and understands that the breathing issues are crippling.
The next steps seem to be getting insurance approval. Fingers crossed.
Will keep you posted.
Our MAC journey has had many bumps, twists and turns and is certainly not for the faint of heart! 🤗
Melissa

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@batessa21

I've been on home oxygen since contracting Covid pneumonia back in June which resulted in blood clots. I have a home oxygen generator with extra long tubing on nasal canula, and I also have portable oxygen tanks that I use when I need to leave the house for appointments (they last about 1.5-2 hours, depending on how much oxygen is needed). My insurance covered the majority – I have to pay a maintenance fee of $14/month. I call when the portable tanks are empty and they send a delivery truck out, usually within 24 hours, to bring me new tanks (I have 2). It keeps my O2 sats at 97% or higher. If I go without it and I'm not "resting", my sats will drop into the 80's. It is a pain to have to drag the plastic tubing around, but definitely helps me be able to get around without passing out.

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Thank you, @batessa21, for your informative response. It does sound like supplemental oxygen could relieve some of my husband’s shortness of breath issues.
Appreciate your input.

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@melissa08

Thank you, @batessa21, for your informative response. It does sound like supplemental oxygen could relieve some of my husband’s shortness of breath issues.
Appreciate your input.

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Absolutely – I will definitely pray that insurance will cover some/all of the costs for him – I've also started pulmonary rehab to re-strengthen my lungs, and they have oxygen tanks there, so I just have to get to the rehab facility and they switch me to one of their tanks so I don't run out of mine while I'm there. Not sure if rehab will help him, but it might be an option as well. Best wishes!

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