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SKlocinski

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Hubby had an episode of extreme (even more so than usual) fatigue for about a week. On Thursday he would not eat or drink anything and laid in bed all day. Friday morning he was short of breath...not gasping for breath but not able to take full breaths either. We went to the emergency room at the nearest hospital. They gave him fluids and the breathing difficulty went away. They tested blood gas levels and they were good. They did scans of the lungs and found that they were clear (no aspiration pneumonia). During that process they caught something on his liver (maybe metastatic cancer, maybe not). Anyway, they kept him in the hospital for a couple of days for observation. They seemed to think that if he had bi-pap it would help if he had another episode as they felt that he was just very fatigued and his breathing muscles just got tired. We asked the doctor about a feeding tube (he has lost 60 lbs since last June) and bi-pap. She agreed to the feeding tube but said he was "not eligible" for bi-pap because when he was tested April 1st his FVC was 66%. I asked them to clarify what "not eligible" meant - insurance won't pay for it or they won't prescribe it until he gets down to 50%. They said that insurance won't pay for it and there is no proof that early bi-pap is beneficial. Anyone have any opinions on that? My personal feeling is that if it isn't detrimental, then what is the harm in trying it? We would pay for it out of pocket if necessary. Also, does anyone know if VA will pay for it before FVC gets to 50%? Hubby has Medicare right now but as soon as VA processes the application for medical we will be switching to VA for his ALS care. They do have an ALS clinic at our VA. He has already been granted VA benefits. We just need to get him into the health care side.
 

lgelb

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With the symptoms you describe, there is very little question but that BiPAP would benefit him, and there is research to suggest that ~75% should be the threshold, not 50%, especially with symptoms. There is disagreement about which breathing test is best and what the cutoff should be, as the tests are not all that. It always takes a while for payors to catch up.

Sites like secondwind sell reliable, warranteed used BiPAPs for cash, and it never hurts to have a backup machine. All you need is an rx that any doc can write. But I gather the VA might provide one (vets and their CALS will speak better to that) regardless, if you need to wait that long.

Best,
Laurie
 

SKlocinski

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I am finding that this ALS clinic (or at least this doctor) at MUSC is very "by the book". They don't appear to want to try anything that isn't written on a stone tablet somewhere. We are willing to pay for it if insurance won't and if it won't hurt him, what is the big deal? If it doesn't help him, then we can just stop using it and save it for later when he needs it. They will also not prescribe any "off-label" drugs even if there is anecdotal evidence that they may help. I have an appointment with our primary care doctor next week. When I go, I may ask her if she can write him a script for bi-pap. Ironically, the PCP is more sympathetic to hubby's overwhelming fatigue than the ALS doctors. Maybe because she had breast cancer and went through extensive chemotherapy. I understand that can cause the same kind of fatigue.
 

azgirl

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My doctor is very much a believer in early BiPAP. She ordered A sleep study for me early on that showed I was not breathing properly at night even though my fvc was still in the 80s. And I was not having any breathing difficulties in the daytime. Can you ask for a sleep study? Medicare paid for mine based on the sleep study results
 

SKlocinski

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They did say that at the ALS clinic next week they will test his breathing both sitting up and lying down. As for the sleep study, I'm not sure hubby is up for that. He is so fatigued all of the time and that would probably just make it worse. If they are still like they were many years ago when I had one, sleep study is a misnomer. They put you in an uncomfortable hospital bed, hook you up to all kinds of crap and then tell you to sleep. Yeah right! Anyway, I am going to push for the bi-pap again when we go to the ALS clinic if the PCP won't write one. I'm going to try to find some research to support earlier bi-pap
 

notBrad

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From my Dr. - " Insurance will pay for AVAPS with a forced vital capacity of 50% or less, OR a negative inspiratory force of -59 or lower."

Check his MIP score.
 

maryhahnward

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The VA should get it for him. Our VA did and my husband was not at 50% when he got his. In fact he was much higher than that. Use this info if you need to. It was published July of 2014. I've used it a number of times to get what my husband needs. I've sent it to VA healthcare providers - whatever it takes to get the proper care is my way of thinking. PM if you need some help.http://www.pva.org/site/apps/nlnet/content2.aspx?c=ajIRK9NJLcJ2E&b=6350111&ct=14224811
 

SKlocinski

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We are waiting for VA to process his application for VA medical benefits. As soon as he has that he will be switching to VA. But since I don't know how long that will take we will pay for it ourselves if we need to. I did find a study on the internet that seems to indicate that getting Bi-Pap at less than 75% does provide benefits. I will take that with me to the MUSC VA clinic next week. I just don't know why they would refuse to write the prescription. It will not hurt him. We are willing to pay for it. So what skin is it off their nose if we get it now or later? There are no "rules" to ALS!
 

patrick123

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A BiPap is one thing that has proven to be beneficial to PALS.
PATRICK
 

SKlocinski

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Got the letter today from the VA. Just need to make hubby an appointment to see a primary physician to get his foot in the door. So we may be able to go the VA route....
 

KimT

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I'm so very disgusted at the whole insurance mess we have in the US. I was having major trouble with my BiPAP, then found out it wasn't even approved by Medicare. I got so discouraged, I gave it back. Here I am trying as hard as humanly possible to blow over 65% when I should have just given it a half effort and got it approved. My sleep study showed I needed one but in our healthcare system we are not people, we are numbers.

I'm so sorry.
 

Kjservant

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Absolutely the VA will cover a bi-pap. I didn't read all the responses but our local VA ALS clinic has been incredibly helpful (with all the bad rap VA gets). As a vet this is a 100% service related disease and he us entitled to it. ask ask ask.
 

Kjservant

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Another quick bit....get in touch with your local PVA-paralyzed veterans group- they are extremely helpful and will make sure you get processed quickly into the VA system.
 
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