Bipap- how decide hours on?

[Tomswife]

I cant believe I have to post this question. Not because I dont trust this very trustworthy group, but because the pulmonologist should have given me some criteria.
Tom is late stage ALS. He is rapid progressing so we have only had the bipap perhaps 4 weeks. Even when it arrived Tom only used it a few hours a day. He likes the bipap so now he wears all night and maybe 6 hours per daytime.

Criteria for use: Question to PALS, if yes Bipap.
Or...oxygen below 93. CALS puts bipap on.

Removing BIPAP: Question remove, if yes then bipap off.

Is this process nuts? Or is this the way bipap use is decided? Pulmonologist did not offer clear criteria.

 

[lgelb]

There are no criteria besides how he feels. When he wants it, he needs it. If his sats are falling below 93 without it, he could benefit from 24/7 use apart from cleaning his face and when he specifically wants it off. There's no need and not much point from a health perspective to deliberate time off.

General note -- hours of BiPAP use per 24 hours doesn't line up with stage of disease. We already knew Tom's muscles were weak in different ways than many PALS. It is what is weak that counts more toward BiPAP than any point in the calendar.

 

[Tomswife]

What do I do when he is no longer able to clearly communicate? Now he shakes his head. But perhaps when he is that far advanced , unable to communicate, the bipap will provide comfort.

 

[Nikki J]

Can he blink? My sister could until the end. One for yes. Two for no. We also used blink for the eye chart when she was too tired for eyegaze.

 

[swalker]

My case may be a bit different from others, but I will share my experience.

My respiratory muscles were affected fairly early. My FVC (Forced Vital Capacity) has been below 20% for over 4 years now.

My need for NIV (bipap) is dictated largely by my body position. When I am flat or close to flat, even reclining in my hospital bed, I need to use the NIV. The doctors tell me that I cannot expel enough CO2 to keep things in balance.

I also use the NIV when I feel run down.

In essence, you can say that I use NIV as necessary. Once we got it adjusted to work for me, I have used NIV every time I am reclined, flat or feel especially run down. That amounts to 10 to 16 hours per day.

Steve