ALS Pneumonia and oxygen

[caring daughter]

I think I understand the problems encountered with the use of oxygen in ALS. However, does anyone know about the if someone with ALS has pneumonia, can/should oxygen be used at these times (both while using bi-pap and while off of it)? Does anyone use oxygen along with their bi-pap even if they do not have pneumonia? Should the use of oxygen be based on oxygen saturation rates or avoided all together? Thanks for your feedback.

[paula B]

I have bipap machine and use ox at night. Use bipap also anytime when laing down,,ox only at night.

PaulaB

[Al]

From what I understand oxygen is needed by most people during bouts of pneumonia. Fluid in the lungs decreases the capacity so O2 helps. Usually with a Bipap your lung capacity is not the problem. Your lungs will absorb the O2 but can't get a big enough breath on their own. Some people such as Paula may have other issues at play but generally speaking most people with ALS don't need supplemental O2.
AL.

[hboyajian]

The only experience I have with this is when my dad was in his last days, so I'm not sure it will help with a person who is not experiencing complete breathing failure in addition to pneumonia. Dad had the beginnings of pneumonia in one lung, and the pulmonologist at the hospital chose to put him on oxygen interspersed with the bi-pap machine in an attempt to get his lungs functioning again. My concern at the time was whether the pulmonologist also knew enough about the involvement of ALS in a patient. A neurologist (unfortunately one my dad di not trust) was called in to help with this issue, but it really would have been better to have a specialist in ALS involved. My dad's doctor was away on vacation. Anyway, I think this question might be best answered by a pulmonologist and an ALS specialist working together to resolve whatever difficulties a PALS is experiencing. That way they can put their knowledge and experience together. It appears to me that doctors often work in isolation, afraid to tread in each other's territory rather than being collaborative. I hope you can come up with a workable solution and are able to recover from the pneumonia.