Bipap lengthens life

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Thanks for posting the link Ann! We Newbies need to know everything.
Hugs,
Marta
 
The word I got from the respiratory folks at my ALS clinic is that, once your breathing muscles start to go, that progresses at anywhere from 6-10 points (or more) of FVC per month. Using BiPAP reduces that decline drastically. In my case, I saw only a couple of points of FVC lost the first year I was using BiPAP (nighttime only) and it's probably the reason I'm still here today (24/7/365 BiPAP for about 22 months now).
 
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Trfogey,
Are you able to go out with the bipap on?
 
My question is why would they wait til the FCV is so low? Mine isn't down to 50%--and I'm having a heck of a time breathing--why wait THAT long? Mine gets repeated next month...but that just seems very low to give some aid since O2 isn't recommended.
 
Trfogey,
Are you able to go out with the bipap on?

I don't go out much any more for other reasons, but yes, I was able to go out with the BiPAP once we found a reasonably portable power source. A lot of PALS have rigged up ways to power the BiPAP from wheelchair batteries and you can buy electrical inverters that will allow you to power things from the accessory plug in a car.

Hope this helps.
 
My question is why would they wait til the FCV is so low? Mine isn't down to 50%--and I'm having a heck of a time breathing--why wait THAT long? Mine gets repeated next month...but that just seems very low to give some aid since O2 isn't recommended.

If you think a minute, you can guess what the answer to that question is -- money. It took a lot of armtwisting to get insurance companies and Medicare to accept the findings from that 12 year old study that abbas child linked and agree to pay for BiPAP at all. It's going to take a similar amount of armtwisting to get them to accept more recent findings that show that BiPAP works at even earlier points of respiratory progression, with the FVC number 75 being the new standard and some folks pushing for anything under 100 qualifying.

Keep the faith, notme -- I got my BiPAP at FVC of 48 and that was more than 3 years ago. Used it only at night for the first year and a half, smoked a pack and a half a day for the first year, and I have never been on Rilutek -- just a few standard nutritional supplements that I quit taking about a year and a half ago because they didn't seem to do me any good any more. I don't recommend doing things my way on most things, but the one thing I have been compliant with has been the BiPAP and I've never regretted it.
 
I'm not sure why, but you really have to argue with some pulmonologists to go on BiPap before your FVC is below 50%. Medicare issues possibly? I know they will approve Trilogy even though it is a far more expensive machine. We had to battle to get my husband moved from CPap to BiPap. Riduculous. When he was moved over, his rapid decline in FVC (down over 10 pts. per month), the decline stopped. Cold. No decline in one year.
 
Thanks, this is all such useful information.
 
I'm not sure why, but you really have to argue with some pulmonologists to go on BiPap before your FVC is below 50%.

I had a similar experience with a pulmonologist, Missy, even after my FVC went below 50 percent. Fortunately, my ALS clinic neurologist has enough testicular fortitude to manage that part of his ALS patients' care on his own and not defer to the pulmonologists' "union" or "cabal" or "guild" or whatever you want to call it.
 
Which must be why my Neuro is wanting me on bipap rather than the ordered cpap. Mine is definitely below 75% I honestly don't know how you guys manage to do anything with levels below 70%.

I am literally constantly exhausted. I'm still trying to teach--and my daughter will have to take over because I simply can't talk and show whatever procedure it is at the same time. It's absurd.

HOW do you all DO anything?
 
I got a bipap when my FVC was in the 70s. The ALS clinic put me in touch with a respiratory care provider who gave me one on loan until my FVC reached the 50% level, then they got reimbursed by insurance. It made a big difference in the rest i was getting. That was in April 2010. FVC is in the 30s now, but the decline has slowed quite a bit. Still only use it at night and for naps.
 
I got a Trilogy at my first clinic visit in June of 2010, fvc was about 70%. There was no ? about getting it, Doctor ordered, it was delivered and insurance started paying. It helped so much with getting restful sleep. I can not imagine waiting till fvc was at 50%.
 
I wish I knew what was my sucky lungs, what was sucky muscles and what was just plain "getting older" but the outcome is "feel like general warmed over crap" most of the time with little energy.

An article trfogey referred to talked about bipap in mnd and neuromuscular disease--kind of implied that venting isn't needed at all if used properly
 
My FVC was 86 when I got my Bipap in Jan. 05. It's around 44 now and still just use it for sleep or lying down. Used it lying down for Upper GI series last week. Sucked barium through a straw pushed under mask.

AL.
 
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