Fvc %

[SixthKid]

My Dad went to have some testing done yesterday to see if he would be able to have the procedure for the NeuRx Diaphragm Pacing System. Well that is a no-go, very disappointing. One of the reasons is his FVC is 36%. Early December he was just below 50%
So my question is:

What % is getting extremely dangerous? Obv I know that the drop is NOT good & I tried to g**gle it to find out what it all means (I know trfogey is just about to slap me upside the head lol) I just want to know where we are at, what are we looking for now. I know his breathing really sucks right now & he's constantly coughing up phlegm.

It seems that his % has dropped rather fast? Oh shoot as I'm writing that I know everyone is different.....ugh where's my crystal ball....I guess what I want to know has anyone been at a lower % and kept on "trucking" for 3 months, 6 months etc?

 

[pmbenb83]

My husband has been below 20% for a long time and is now closer to 10%. He is on BiPap 24/7 with 2 liters of oxygen at night while he's sleeping. He has been lower than 30% for well over a year. He can still eat, drink, talk, and walk slowly for a very short distance. You're so right...everyone is different. I hope your dad can keep on "trucking" for many years to come.

Take care.

 

[trfogey]

My FVC was in the low 30's two years ago. Last time I had it checked, it was 26 (May of 2010). I'm BiPAP 24/7/365 and still here.

Sorry your dad didn't qualify for DPS. And, tell him to use his BiPAP during the day -- he'll feel better.

 

[cervus]

Bob's was at 34% just before he died. See? Everybody is different

 

[CAHPAH]

My wife lost 5% a month for 14 straight months then it leved off. 18 months ago she was at 18% and they stopped running the test. I read a study somewhere that indicated FVCs are not a good indicator of mortality. My wife would bear this out. I am grateful. This is one of the frustrating things about ALS, you simply don't know what is coming next. My very best to you.

 

[SixthKid]

It is very frustrating! But if there is a chance I still have 1+ years with him I am sooooooo grateful. I am truly grateful for every moment we get to spend.
My Dad does use oxygen most of the day. Not sure how much of the bipap he uses? Maybe mostly while sleeping.

Thanks everyone for your responses! I am so lucky to have found this forum

On a side note: I have to sit with my Dad tomorrow while my Mom attends a funeral for one of their friends. I am a little nervouse/scared. Only because sometimes when he tries to cough up some phlegm it is difficult for him & seems to get "stuck", his face turns red.......I don't want to panic & freeze on him. I'm gonna be such a wreck! What a baby am I? My Mom has to deal with this 24/7~God bless her I don't know where she gets her strength sometimes

 

[CAHPAH]

Sixthkid
I understand your nervousness. It is difficult to watch someone struggle to clear phlegm when they don't have enough lung capacity to cough. I remeber the first time my wife assperated some liquid. It was very frightening. She told me afterward the thing that helped her most was my oldest daughter leaning down and softly saying into her ear the everything was going to be OK. And it was, as it will be with you as well.

 

[Okie2]

Does he have a cough assist machine, or a suction machine? It would help in clearing the gunk out.

 

[cervus]

Using a nebulizer will thin the secretions and help cough things up. It works amazingly and is definitely worth having.

 

[SixthKid]

He does have a suction & nebulizer. He uses the suction constantly. I'm not sure about the cough assist? I'll have to check that out tomorrow

 

[caldona]

I am not a medical person just someone with ALS but from what I hear and have read we should use oxygen that runs through the bipap and should not be the kind that has to be refilled a nurse told me that if my oxygen level was 93 or below I should use it but not to let them use the oxygen with the tube in my nose because it can build up co2 in my lungs.

 

[SixthKid]

That's exactly what Dad uses, the oxygen tube in his nose. Ok so now I'm freaking~build up of co2 I know is not a good thing

 

[Georgia Peach]

THANKS so much for asking this question. My husband's FVC is at 36% and I wasn't sure if it was a predictor of mortality either. Cough assist and suction are coming for my husband. He is starting to cough and choke when he eats. Last night he choked as he was brushing his teeth before he was able to spit.

ALS is so hard on everyone.

 

[caldona]

Check with your dad's doctor because I have found that not all medical people know about ALS

 

[caldona]

My oxygen machine is hooked up to my bipap machine all of the time when I need it they just flip the switch . They never have to come and fill it because it's not liquid.