Very low FVC

[diagnosed2016]

How long can one survive with an FvC below 20%? (And no vent)

 

[lgelb]

On BiPAP that is set the best it can be and adjusted to the PALS' needs over time, a year or more, potentially.

It depends on which muscles used in breathing are weak, how fast others weaken, nutrition, hydration, and the desire to go on.

Best,
Laurie

 

[Diane H]

The rate of ALS progression is a key factor but at 20%, all of the things Laurie mentioned are really important. But the critical thing is usually whether you catch a simple cold or respiratory flu. That is very often the endpoint and isn't predictable so can't be used to estimate the time you have left. At 20% there is no room in the lungs for both breathing and congestion. Even BiPAP may not be enough. Aspiration pneumonia can happen from saliva even if you are not eating. Sorry to be so grim but that is the way it is.

 

[azgirl]

my fvc was last measured in the twenties well over a year ago. I do all the things Laurie suggested in addition to regular use of cough assist to clear lungs.

 

[diagnosed2016]

Thanks for the answers. I know it all depends on a million different things but the Dr brought up hospice for the first time so I was on alert. His weight hasn’t changed, he still eats fine, but FVC has tanked, especially so over the last couple weeks it seems like.