FVC question

[terri]

Hi Everyone,

LB had his FVC checked again today and it was down just a little more to 47%. I thought sure his pulmonary doctor would at least hint that a Bi-pap might help him soon. When he didn't, I ask him when he would think one might be needed. His reply was at 1liter. That sounds a little late in the game to me. Are there other things that would play into that decision? His oxygen saturations were good. LB is just so tired all the time. I should have asked more questions but at the time the doc seemed so unconcerned.

Thanks guys.

terri

 

[lunarruna]

Terri...
I too am curious what responses you will get here. My husband doesn't get his FVC tested since we dont make it to doc anymore...home health nurse checks his oxygen on his finger and says as long as it is above 90% he will be okay with out BiPap. He is always at 95% but his breathing seems so shallow anymore........I just have this nagging feeling that he may be needing the Bi Pap. Does anyone else use the oxygen levels as a gauge or is it really important for us to get his FVC tested somehow? (We live very rural, 70 miles from doc and hubbie just wont make the trip anymore...)
Beth

 

[Jeannie]

Hi Terri

LB might want to try a drug called Provigil (sp?) Ive heard its very good at relieving tiredness.

If LB's blood oxygen and carbon levels were within normal levels and hes not getting headaches I would go with what the Dr said.

Take care Jeannie x

 

[rcharlton]

I don't have a bi-pap yet, but if your husband is tired - I would push for the Bi-pap to see if it relieves his tiredness. I mean - why not?

As you know surviving ALS is all about preserving energy and not waiting until the last minute to adapt to changes in our body.

My ALS specialist feels that the bi-pap is on of the best tools to increase lifespan. He also advised me that he has patients who have started using it even when FVC is as high as 85%.

 

[Al]

My FVC was 84% last week and I've been on Bipap since Jan. of 05. At that time my CO2 levels were high and O2 low lying down which is why I got the Bipap. They need a sleep study to get those values or sometimes an arterial blood gas might be used to check values. AL.

 

[terri]

Thanks for your input everyone. I don't think his doctor plans on doing the sleep study until he is down to 1 liter. The only other thing he checked besides the FVC was the sats using the little blue clip on his finger.

Thanks,
terri