Supplemental Oxygen

@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

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.

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

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.

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!

So, I am back with an update on Bruce's quest for supplemental oxygen. He has continued with extreme shortness of breath coupled with a number of Bronchiectasis flares. Cavitary MAC seems to be suppressed for the time being, based on a solid and lengthy string of negative sputum cultures.
Bruce continues to be off the Big 3 plus Arikayce since August, however his doctor is gently pushing for a restart in late January or early February.
He was able to get supplemental oxygen after doing a couple of overnight testing processes that measured a low and consistent blood oxygen rate of 82 over a 40 minute period. He was told if he was in the hospital alarms would have been going off.
He then did a measured walk with a member of his pulmonology team and hit a low of 86. Then he followed with a lung function test which showed a 30% drop in functionality over the past year and a 50% drop from two years ago.
So he's on 2L/minute of oxygen 24/7 with yards of tubing running through the house from a concentrator unit. He's also got a refill system on the top of the concentrator for a couple of portable tanks which give him a little bit of autonomy.
Shortness of breath continues as do the Bronchiectasis flares, both of which are slightly more manageable with the additional oxygen.
I do have a couple of questions for those who are familiar with the use of supplemental oxygen. Bruce gets extreme and sharp pains inside his nostrils, and his nose is very dry, especially in the morning after waking up when he usually has a bloody nose. We were told it was due to the drying effect of the oxygen. We have a whole house humidifier which has been pretty effective in the past. However the addition of a humidifier attachment was recommended for the concentrator unit. Is anyone familiar with such?
He has morning headaches which mostly resolve with a dose of Excedrin, but sometimes not. There are also periods of extreme fatigue which are aggravated by some of the medications that have been prescribed for the Bronchiectasis flares. Does anyone have any experience with or tips for mitigating these effects or are they something he has to live with?
We have had these discussions with Bruce's ID/Pulmonology team at Johns Hopkins with varying results, which they say is mostly due to the acute nature of both the Bronchiectasis and the cavitary MAC.
Thanks for all the good advice as usual. This group has been life saving for us.

I am not sure about using the humidifier on the oxygen concentrator - probably safe if you use boiled water & keep it cleaned out.
Here is a simpler solution you might want to try - Arm & Hammer makes a buffered (neutral) aerosol saline nose spray. It is not at all irritating, and can be used as often as he needs. I find it works in our house, which must remain drier than my body prefers to keep our windows from icing up in the current cold weather. I also use a light coating of mentholatum or coconut oil in my nostrils at night.
Has he tried a saline spray?
Sue

Sue,
Thanks for your quick and helpful answer.
We are on hold at the moment for any additional humidity or nostril soothers.
Bruce was taken by ambulance to one of our local hospitals yesterday morning with congestive heart failure.
Not surprisingly Bronchiectasis and MAC have done their worst to not only his lungs but also his heart.
Prayers and good thoughts appreciated.
I will be back with an update.
Melissa

Oh my, Melissa! My thoughts and prayers are with both Bruce and you. CHF is so scary.
Take care and let me know how he is doing.
Sue