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Patti A

New member
Joined
Mar 7, 2012
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7
Diagnosis
03/2006
Country
Uni
State
NY
City
liverpool
I have a question I hope someone can answer. My husband Mark has ALS now for 8 years. He uses Bipap all night and sometimes during the day. Last clinic his PFT's went down. In one month they went from 34 to 25. His 02 levels are good. My question is how long before his 02 levels become effected? His left diaphram is no longer working and his left lung ic collapsed. His right lung is good. Last Dec he had a bad case of pneumonia and we almost ost him. He is not going to vent. Can anyone give some kind of info as what to expect?
 
It's my understanding that some PALS can live with a very very low FVC for a long time, even years, if their O2 sats stay ok. So I don't think anyone can give you a time frame. When his O2 sats do start to fall, he'll experience air hunger. When that happens, since he chooses not to vent, hospice can be called to give him morphine to make him comfortable until the end.

I really don't know a lot about this, so I hope someone else will chime in with better answers than I can give!
 
The same question that you have posted in PALS section has had some responses. Not sure if you saw them. D
 
When I asked a pulmonary dr similar question his response was that it more than likely be an infection that would kill, rather than respiratory failure on its own. Use cough assist regularly, have a supply of strong antibiotics in your house and start husband on them at the first sign of a cold/sniffle. This was advice given to us and we follow it.
 
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