FVC Results

[kylisa]

Well, my mother's FVC is 35%. She is refusing to use the bi-pap and oxygen. The Clinic nurse advised us that hospice services can now be implemented. At what point do most people begin using bi-pap? I know she has a high threshold to pain but, goodness, I fear she is not going to be with us much longer because she won't use the bi-pap.

 

[Charys]

BY FVC do you mean the oxygen saturation (sorry I'm fairly new to the terminology used on the forum). If that is what you are referring to, my father's is at 93/94 % during the daytime but at night has been dropping below 70% at times. He has just started using a BiPAP at night this week, just compressed air and no oxygen. Hopefully someone will come along soon with a huge amount of knowledge, as I'm afraid I am unable to asnwer your question really.

 

[kylisa]

BY FVC do you mean the oxygen saturation (sorry I'm fairly new to the terminology used on the forum). If that is what you are referring to, my father's is at 93/94 % during the daytime but at night has been dropping below 70% at times. He has just started using a BiPAP at night this week, just compressed air and no oxygen. Hopefully someone will come along soon with a huge amount of knowledge, as I'm afraid I am unable to asnwer your question really.

My mothers saturation was 94% not long ago. Now, it is around 80% during the day and lower at night.

 

[joelc]

It is past time for her to be using a BiPap. I don't know how she does it without using one. Everyone is different, some people start when their FVC is over 70% and others when their FVC is much lower. I started at about 35% and over a couple of months it increased to 50%.

 

[Al]

My FVC was around 85% when I got my Bipap in Jan. 2005. It's around 60% now. Lying down it was 10% but they stopped the test because I couldn't do more than one exhale on my last test. It's hard to believe she can even draw a breath while lying down without the Bipap.

AL.

 

[kylisa]

My FVC was around 85% when I got my Bipap in Jan. 2005. It's around 60% now. Lying down it was 10% but they stopped the test because I couldn't do more than one exhale on my last test. It's hard to believe she can even draw a breath while lying down without the Bipap.

AL.

I figured as much. She is a tough old bird. She has always had a high threshold to everything. She has always been stubborn too. I am afraid that her stubborness will eventually catch up with her but, since she still has all her metal faculties, we have no choice but to let decide what she wants to do. My father has to reposition her on her wedge off and on throughout the night. He deals with it because, in his words, she gave me 46 good years and I am going to do all I can for her now. We all feel this way and even though our schedules are over taxed at times we wouldn't have it any other way.
We just wish she would utilize the bi-pap and other options that could help her be more comfortable.

 

[CindyM]

I hear you Kylisa. It is hard to stand by and watch this. Hard on the PALS, too, but your and your Dad are doing the work of angels!

 

[hgsunny]

It is past time for her to be using a BiPap. I don't know how she does it without using one. Everyone is different, some people start when their FVC is over 70% and others when their FVC is much lower. I started at about 35% and over a couple of months it increased to 50%.

My Dad was just diagnosed with ALS. His breathing was between 38%-42%. He is supposed to get a BiPap this week. He has had snoring problems (what I think was sleep apnea) for years, even before the ALS.

You mentioned your percentage was 35% and then went up tp 50%. Was that just from the BiPap? Also, is your current rate 50%, or has it gone higher?

Do you do any breathing exercises or use a spirometer?

Do you have any other supplement recommendations or exercise regimen advice, etc.

I would appreciate it.

Thanks.

 

[joelc]

It was a temporary improvement. I attribute it to the fact my diaphragm was getting a rest while I was using to bipap. Unfortunately ALS is a progressive disease and I am now on a ventilator full time. But using a bipap bought me another year before needing a trache and vent. The best thing to do is give the diaphragm a rest by using a bipap.

 

[Connie]

Hi Joel. Your comment about allowing the diaphragm to rest by using the bipap is very helpful. It is a motivating reason for PALs to use them if they are reluctant to do so.

Thanks!

 

[DgtofTNfan]

My Dad just got his bipap about a month ago. He looked at it for the first 2 nights. Then struggled with trying different masks for about a week. Now he wears it without problems for about 7-8 hrs and says he gets much better rest. He use to wake up frequently during the night and it made him very tired during the day. It was a commitment on his part to try it and resolve himself to using it though.

I hope your mom finds comfort and a regimen that best suits her.