Questions about FVC scores

[Barbie]

a year and a half ago, my husband was told his FVC was 24% and he was told that was a pretty good test. last week he had another test and it was at 19%, but the RT didn't think it was accurate. I was just wondering what are other's peoples experiences with FVC scores and their actual breathing style/problems/symptoms. For instance, in 7 years of tests, I don't know if my husband has ever had a "good" test with true results. He just cant make a seal. I do see some breathing issues, but is his FVC really that low? What does 19% (or 25% or 50%) "look" like? is it different for everyone based on which muscles are going?

 

[pearshoot]

have been told the scores are not as important as how do you feel..

 

[Bad Balance]

I believe that much higher scores are "normal"....but I may be wrong
They factor in his height and weight
Sorry to be a downer

 

[davbo49]

i have been having a time with my breathing. dr's ask me if i was. at the time no but now i am. this has been going on for about a week. it's more when i get up from sleeping. i guess im to see this week what's going on with it when i see them again.

 

[GregK]

regarding the seal: they have optional mouthpieces that look like the 'between the lips and gums' mouthpieces used for scuba.

 

[Barbie]

Greg we have a similar mouthpiece, with a great big over the lip flap. I still have to pinch it like crazy to make a seal. Honestly--no one can come up with a better mouthpiece!?

 

[Barbie]

pearshoot I agree it is about how you feel and he feels pretty good--not really short of breath except when laying down. very tired though.


which is why I wonder about what different FVC scores look like on different people.

 

[Graybeard]

My last test was 58%, IIRC. I turn the bipap on as I lay down, and I'm almost in panic mode until I get it pushing air into me. I have the blue Darth Vader mask.

 

[MaxEidswick]

for some reason I think FVC is relative to age, body, etc.

5+liters for me is good, last clinic not so good but coming off pneumonia ...

 

[GregK]

> coming off pneumonia
dammit Max, stop that!

 

[MaxEidswick]

>dammit Max, stop that!

Ditto that! got hit after a soaking at the ALS walk in Houston :-( -- but the walk was fun

 

[Schmidhogan]

Max: by liters does that mean your using AVAPS or volume? My machine has that option but I don't know if or when I'll use it. I came in at 57% at the last clinic. I breath ok when I sit straight up but if I recline I need the bipap. I'm at 10/5 and use my bipap a lot since I spend much of my day lounging in the hammock. I think normal FVC is 80 to 100%. Alex

 

[gooseberry]

It is partly dependent on age and height. I believe over 75% is fine. Under 20% is respiratory failure which is where my pals is at. His shoulders rise up with every breath as he uses his outer chest muscles that are left to breath. You never see his belly move like you would when someone takes a deep breath. His chest flutters or rises rapidly when he breathes. Respiration rate should be under 20 otherwise they are struggling to get air.

 

[rosec]

Barbie, my hubby's FVC was in the mid teens when it was measured in Nov '13. But, the RT said she wouldn't trust the number because he didn't make much of a seal. When he breathes, one can see his shoulders, and tummy rise and fall. He even uses his neck muscles, and he has been doing that for about an year now. When he was at the ALS clinic the last time, in Nov '13, the RT and the neuro commented about that. His hospice doc is a Pulmonologist. According to him, DH's FVC was probably in the high teens when he signed up with hospice in 12/2013 (he did not measure it).

 

[MaxEidswick]

>I think normal FVC is 80 to 100%. Alex

I think the recent posts are on track -- 70%+ is good 20%- is not good