FVC Question

[Kim C]

We've not been to the ALS clinic yet; that is next month. Mom did have Pulmonary Function Tests last week. The FVCs were all in the 40's range. I know that's not good but I have a question. She says she is having no breathing problems at all, and I haven't noticed any so I think she's being truthful with me. She has osteoporosis and is bent over somewhat which I know restricted her ability to take a really deep breath for the test. Would one expect breathing problems with FVC numbers in the 40s range?

She had a good weekend but this morning was back at Lake Woebegone. So hard to see her like that.

Kim

 

[jennifer79]

Kim

My dad's FVC is 41%. He is on a non invasive breathing machine 24/7. I think you would be able to tell if she wasn't being truthful. If we have to take my dad's mask off for a second we have to warn him and he holds his breath. I could tell when his breathing started to get worse just because he would get out of breath so easy and started having headaches. He was diagnosed in February and his FVC was 80 then.

Jennifer

 

[Kim C]

Thanks for the info Jennifer. I understand also a bad seal on the mouth piece can cause poor numbers. She seems to be doing too well, breathing wise, to have numbers that low. Sorry your dad's numbers dropped off so much. This certainly in a gut-wrenching disease. Mom is up one day, down the next.

Kim

 

[Barbie]

Kim- my husband's FVC was 24% in February. he does not use a bipap and says he doesn't need one. I know that it is impossible for him to seal his lips but we had it done at our house and the resp. therapist really worked hard to get a good seal. Once at a clinic a couple of years ago he got a reading of 9% because of his leaky lips! I believe the 24%--had a hospice nurse guess the same number based on how his lungs sounded...

It might have something to do with the co2 build up and the o2 levels as well. this would be good questions for a resp. therapist who is familiar with ALS.

 

[affected]

I will agree here and chip in.

My PALS was 30%, but yes I believe it was partially affected by his lip seal issues, but then the technician was brilliant and went to so much trouble to get the best seal, and did the test more times than usual looking for the best result we could get, giving him plenty of rest in between each test.

So I believe his result could be a little higher than 30%, but I doubt it's too much higher.

What I know with his breathing is - sometimes we are sitting quietly having a cuppa and I just watch his chest from the corner of my eye, and at the same time concentrate on my own breathing pattern.

He breathes much faster and shallower than I do at rest. He doesn't have laboured breathing, he doesn't show any distress, but he does not breathe like I do.

Then if he has any stress or exertion - nearly falls, has to raise his arms to put clothing on or off, little things like that, his breathing becomes harder, more like mine would be if I did a brisk walk for 5 or 10 minutes. Again, not problem breathing, but one shouldn't breath harder because they took their jacket off.

With his tests they also did a lung function test and he did well in that one. So his lungs are good, it's his muscles that are bad. Maybe PALS with poor lung function combined with muscle wastage need respiratory help far earlier than those with good lung function?

I like talking here because I observe and muse to myself, but I'm not a doctor, I'm not an expert, I'm just observing one single PALS. But when we talk here we get to brain storm a little and gather more information and then we all learn some more and we can all maybe help our PALS more, and PALS themselves can maybe make better decisions for themselves.

Very annoyingly, when we went to the neuro clinic last week the lung function results had not come through into his file, so we couldn't even discuss them. I told the doctor what the results were, but it was obvious that without the results in hand the discussion was closed. Lucky he is still breathing on his own eh?

 

[pearshoot]

this appears to be new thread so let me mention stacking air exercise. I don't know at what level it may no longer help but there are many pals that do it and get good results.

 

[patrick123]

My FVC was at 68 and that's when I put on the BiPap. That was back in march. And still right around that range. I'm having a DPS implanted on sept 25th.

 

[lgelb]

There is no straight-on correlation between FVC and difficulty breathing. Shape of body, chest, which muscles are most compromised, other medical issues, how breathing changes to compensate for weakness...so many factors.

However, it is essential to tweak VPAP or BiPAP settings as you go, if a machine is being used. You can't stand pat on the initial settings as things change and progress (not the same thing). It would be like expecting to park with your car on cruise control. And again, the settings must be individualized. For instance, for some people, forcing deeper breaths is optimal, whereas for others, the opposite is true.

 

[jellis86]

I for one think that FVC readings are iffy at best. IMHO it all depends on lip seal, time of day, how tired a person is, etc.

In March I had a pulmonary test and my FVC was 71%. In April I had another one done and it was at 60%, quite a drop in one month.
My last one was performed at the end of July and my FVC was at 68%.

In March the test was administered around 1:00 PM, the one in April was at 8:00 AM and the one in July was at 11:00 AM.
Also, the technician I had in April didn't seem to understand about lip seal OR giving me a rest between tests.

BTW, I have been on a bipap for sleeping since March, it is set at 10/5 and still seems to be working okay for me at those settings.