How much can the bipap compensate?

Nathan · 10-23-2009, 01:43 PM

My brother-in-law was diagnosed in January 2007, and his breathing rate - according to his FVC % - has declined at a consistent rate since then. He started using a bipap at night when his breathing approached 50%, and now that he's at 31% he's going to be using it most of the time.

My sister (his wife and primary caregiver) has been trying to get a question answered with no luck. How much loss in diaphragm function can the bipap compensate for? Is there a percentage at which the machine simply can't keep up? Whenever my sister or her husband ask for these kinds of details at appointments, they get vague answers because no one wants to offer firm answers when the prognosis can vary so much from individual to individual.

Does anybody know how low the FVC can go and still be successfully managed by a bipap machine?

Thank you.

joelc · 10-23-2009, 07:32 PM

I don't know the answer as everyone is so different. But, why not consider a trache and vent? I got mine when my FVC was around 30%. There is a huge difference between a bipap and a vent. With a vent the question you asked would be answered - "Indefinitely"

Nathan · 10-23-2009, 10:31 PM

Thank you, Joel. They are just beginning to explore the trache and vent options. I think at first he was sure he wouldn't want it, but he is now reconsidering as he approaches the point when there is need for it. I know my sister feels like they're getting medical care but not necessarily the guidance they need to make their decisions, so I'm seeking out feedback from the people here who know firsthand what they're going through.

joelc · 10-23-2009, 10:39 PM

Nathan, you can read about my experience and thoughts on this topic here.

Living and Surving with ALS

There might be some other information there they might benefit from as well.