BiPAP Recommended Today

[Georgia Peach]

Even though I knew it was coming, I was somewhat surprised when Emory recommended that he now start using the BiPAP. His breathing has really been affected by the PE and pneumonia, His level is now at 38. One more ALS moment that I knew would come. Just like that last time I saw him standing or his last time walking before he had the pulmonary embolism. Kind of like milestones in the bad way.

When he breathes, sometimes he puffs when he exhales. Does anyone know at what level will the VA will pay for the machine?

We're STILL at 30% VA disability. This is a crime against my husband. I now have the social worker involved too plus the results of the C&P exam. And yes I have a PVA advocate.

 

[cubcake]

I can't tell you how sorry I am that this is all going so fast. I know exactly what you mean by milestones in the bad way, too. I hope that you have understanding family around you, and are receiving at least that sort of support.

 

[HelenL]

I'm sorry that the VA isn't stepping up to the plate to help your hubby, especially since his progression seems to be fast.

On another note, my brother lived in Lawrenceville for about 16 years before moving back to Mass around 2000.

Sending you a hug, we can all use one at times.

Helen

 

[momap53]

I'm so sorry you guys have reached yet another milestone on this rocky road. I'll be praying for VA to make a quick upgrade so that you can get the equipment that you need.

 

[brooksea]

I can't give you any advice about the VA, but my husband was told to get the BiPap as soon as Medicare would approve it. It just so happened he had a pneumonia scare several years ago and qualified, because they did a breathing test.

The BiPap should make him feel better.

 

[Georgia Peach]

He woke up us at 3:30 this morning aspirating and he's still coughing. I thought I was going to lose him right then and there. He has acid reflux among other things and has done this for years but now with ALS it's terrifying.

 

[Danijela]

Hi,

sorry about this. Try to keep him calm and ask him to try and breathe through his nose. Has he got a feeding tube? If so, try to release the air by opening the tube (my partner had a problem with what seemed like acid reflux, releasing the air from tube helped).

Sittting up right, supported by pillows should help until you get the Bipap.

Dani

 

[Sequoia]

I am so sorry Peach, but the bipap is my best friend now, after I wrestled with it for a month or so....It is so good to fill your lungs with air!
It may take getting used to....I hated it at first, but now I dont even notice it when I am asleep. I was advised to use it while watching TV or reading a book, so that I could get used to it slowly. Hope this will relieve your husband....

 

[Barbie]

I am so sorry to hear that you need a bipap now-- but I know it will make him feel better! Don't know anything about the VA--sounds like just another hoop you have to jump through when that is the last thing you need!

 

[Okie2]

Like it has been said use it a during the day a little bit and get used to it. Once he can go to sleep with it he will get a better rest, and have a possibly more energy. It just takes a little adjustment to sleeping position. I still wrestle mine some nights but all in all, I could not sleep without it.

 

[TedH5]

I can not answer your VA question but I can say they going on a bipap is actually a good thing. As a matter of fact everyone at Emory will tell you they wish they could put patients on it as soon as they were diagnosed. I believe that your husband will sleep better using it. ItI may take a little to get used to it but make him committ to it. It will help. Good luck!

 

[LizT]

he will have more energy to do more important things once he get accustomed to the bipap. amazing what air can do for a person!
id also suggest having an elevated upper body while sleeping or laying down.

 

[Beach Bum]

Someone at the VA is guilty of not doing a good job.I would get in contact with the manager of the PVA and tell him what is going on,your husband should be 100% now,I am comparing your story and mine,they are different.VA has done so much for me.Wish you the best.
-----------------------------------------Hugs Ken