What was your FVC when you went on BIPAP

[briana]

My sister FVC remains in 80%, but she is having a lot of breathing problems.
Recently she had a home pulse oxymetry test that showed a lot of "desaturation" events.
I talked to her Dr this AM and he said that he can't give a script for BIPAP unless her FVC is below 70%.
What was your FVC when you went on BIPAP?
Shall I request other breathing tests?
I'm so lost and don't know how to help my sister.
Thank you all, Briana

 

[CAHPAH]

Briana
Since Jan 09 my wife has lost 5% of her FVC every 4-6 weeks. Our Dr. wouldn't consider putting my wife on a bipap until her FVC was below 50%. When she reached 48% we had to wait six weeks to get into see the pulminologist who then set up a sleep study which we had to wait 4 weeks for. She didn't sleep enough during that one and they wanted to set up another. We got fed up and swithced to another hospital what had an ALS clinic. They had a bipap out the very next day but by then her FVC was down to 38%. I wish we would have switched to the ALS clinic sooner. Best wishes to you.
Jim

 

[BarryG]

I just went on Bipap last Tuesday after my April clinic showed my FVC at 65%, down from 77% in January.

 

[briana]

Barry and Jim, Thank you so much for your reply.
Are there any other breathing tests I should be asking for?
FVC test is the only one we have done so far.
Thank you again, Briana

 

[tomby]

Mine is about 65%, down from 95% in October and 82% in January. I actively pursued getting a bipap through my ALS clinic. My insurance won't over until I'm below 50%, but I was able to get one on loan two weeks ago thorugh an equipment supplier that works closely with the clinic. Insurance denied, but they are willing to wait for payment until I qualify. It is taking some geting used to, but I am sleeping more deeply and waking more refreshed. Is your sister's test results sitting or supine? They are generally lower lying down, which may help her qualify. I would encourage her to aggressively pursue getting one.

 

[helpinhand]

My father-in-laws FVC was already at 48% when diagnoised with ALS in Jan. we started Bipap right away by Feb down to 40% haven't been tested since. Next clinic date July 6th.

 

[CAHPAH]

Briana
When my wife had her appoinment with the pulmonoligst they ran a whole series of test with her sitting in a glass booth and breathing into a mouth peice then had her walk up and down the hall. I am really not sure of the value of these test or what, if anything, the clinic doctors have done with them since we switched. The FVC seems to be to one they put the most importance to.
Jim

 

[briana]

Again, thank you all for the info.
I've been reading a lot about ALS and just came across an article talking about the following tests (in addition to FVC) for respiratory muscle weakness:
MIP (max inspiratory pressure)
MEP (max exp. pressure)
SNIP- sniff nasal inspiratory pressure
Have you you done any of the above? My sister never had them done.
Briana

 

[brooksea]

FAKE IT!

She will have to stay ahead of the "game!" Loose lips do not provide good results, as well as decreased effort to blow or inhale!

In the meantime, as suggested, try to get a loaner from the ALSA or maybe MDA.

 

[CAHPAH]

Briana
Those are the ones that my wife had done, but, again, I'm not sure how they fit into the scheme of things.
Jim

 

[Al]

My FVC was 86% in Jan. 05 when I got my Bipap. It's around 44% now. Still just need it at night.

AL.

 

[tomby]

Al, That is really encouraging - thanks, Tom

 

[indigosd]

This is another issue that makes the MONKEY'S twitch and writhe in frustration. EVERYTHING you read states that PALS need BiPAP to prolong their life and improve the quality of their life. But can most PALS get BiPAP before they are in Respiratory failure? Honestly, it is freaking ridiculous that PALS have to be subjected to repeated PFT's, ABG's, Sleep studies etc. We need to demand that ALSA advocate for us and we all need to shout from the rooftops about this horrible money gouging abuse by Medicare that is robbing our PALS of their very lives. I mean how many people are going to ABUSE a BiPAP?! Web again did not qualify for a BiPAP and he struggles to breathe at night and is so SOB [medical jargon for Short Of Breath] with any exertion. He was a runner and exercise enthusiast all of his life so his FVC was always way above normal. He is now at 90% and doesn't qualify...I am so frustrated and angry. The Minnesota ALSA did loan us a cough assist and that is definately helping. Anyone want to get political with me about demanding a change in the Standards of Care for BiPAP and ALS?

 

[Miss]

Okay, I'm really confused. My husband was at 125% in January, and they told us at clinic he is at 41% now. How is that possible? He is not struggling to breath. He has to take deep breaths now and then, but he is sleeping through the night with his Cpap. We are heading to a pulmonologist next week. Can someone "educate" me so that I know the right questions to ask when we go? I am trying to educate myself via the Internet, but I bet someone here can do a better job! How do you know when you need a cough assist? For the first time last night, my husband was coughing.

 

[irismarie]

I cannot "educate " you at all; but my breathing was nearly 100% when the pulmonary specialist said I should have the bipap just cos she could SEE I was not breathing easily. While I HAD the bipap she tested the oxygen level with just a weird little gadget she fitted over my fingertip. But no question of waiting and when I complained the first I tried had cold air and made my mouth dry she immediately ordered one wich air moistening and warming functions. All free on the state. ANd the man who fitted it in the hospital will come and visit me at home to see how things are going. Anyway with "an illness of long duration" gets the famous 100% and everything to do with their illness is provided free, right down to ambulances to and from the various therapists, even several times a week/

Love to you all
Tired now - just got home but will write more about my interesting hospital stay tomorrow