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lerg62

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My brother Buddy has started on the BiPap machine and he is not liking it,(only two days i told him he had to give it more of a chance) he is wearing it all night but says half way through the night it starts to smell really bad (like poop was his words and he has such a way with words) I was just wondering if that was normal? is that the CO2 buildup coming up from him that hasn't been coming up due to his low FVC? and will it go away? Has anyone had this problem?

I actually have a hundred questions about everything that is happening but you guys on this tread are soooo awesome most times I find the answer before having to ask but I have not seen this one.

God Bless
Lerg
 

mndireland

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Hi Lerg, My mam has been using the bipap since july this year and still hasnt got used to it. She wont take it at night at all, feels a bit suffocated with it. It is really uncomfortable and sometimes all night might be a little too long and too many hours for a start. I usually put it on my mam after breakfast about 10am and she sits watching television for 2 or 3 hours, then in the afternoon for another couple of hours, maybe try this to start.

You will get the answers to all your questions here, Ive got more info here than I have off any doctors, so feel free to ask!
 

Al

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Have you ever had morning breath? In the morning your breath is bad. If he's using a full face mask he may be just getting a whiff of his own breath blowing back in his face so to speak. Using a good mouth wash before bed may help. I forgot to clean my mask one week and just give it a good rinse every day and in the second week a bit of mould started to grow behind the silicone seal. Clean it well and make sure it's dry before reassembly. Hope this helps.

AL.
 

CindyM

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MOLD? Yikes. What do you use to clean your mask, Al? They told me about cleaning it but I forgot all about this.

BTW, I am still using the old CPAP. It is an insurance issue. Seems I got the sleep study and CPAP upgrade just on the cusp of realizing I really needed a Pi-Pap. So we have to wait until after the first of the year.

For anyone wondering - any machine that gets oxygen into you will make a big difference in your symptoms. My face muscles have settled down and don't twitch so much, and I do not get as tired chewing. Most days I have enough energy to climb stairs at least a couple of times. So, for me, it is a big deal. The difference between the 2 machines is that if I use a CPAP all night I wake with lungs feeling like I have been out jogging, probably because my chest muscles are working more than they like. I am constantly experimenting between using it all night, to using it for part of the night. I expect the Bi-pap will take away the need for this experimentation.

Anyway- did not mean to ramble on. Sorry if I hijacked this thread.:smile: Cindy
 

rose

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Cindy

Thanks for your input. When this was being discussed last week, I was advised that maybe its the CPAP would work best for me rather than the BiPAP, due to it being mainly a soft palate weakness at the present time. She'd said I should try both while at the sleep clinic. I wonder if a BiPAP can be set to work like a CPAP? Or is it an issue that insurance would not pay for the Bi if the C would work. Is one more expensive than the other?
 

Al

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I take the mask apart and soak it in warm soapy water and then use Q tips to clean in crevices (where the mold started). Rinse well. I then put about a cup of vinegar in sink full (kitchen sink) and let soak 15 minutes rinse and air dry. I do this with mask, hoses and humidifier water container. Some manufacturers recommend not using vinegar but I've never had a problem.
I'm not sure if a bipap can be set to run continuous or not. A CPAP here is about $1500. A Bipap is around $6000 although with the healthcare we have we don't pay for them.

AL.
 

rose

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Thanks Al. MY train of thought was that if it was expected to later need the bipap, then why not kill two birds with one stone. If the BiPAP is that much more as far as cost, the insurance wouldn't cover it even if it could be adjusted to run continuous. They want me to try both machines anyway, next sleep study.
 

brendapals

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Can someone tell me if it's OK to use plain tap water in my water heater on my cpap? We are on vacation and staying all night in a little one horse town, and I forgot to stop and get distilled water at the walmart. My hubby asked me why I couldn't just use water, I told him I would ask my buddies on here!
thanx
brenda
 

patricia1

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I was told in a pinch you could use tap but why not use bottled spring water or boil and cool the tap.I use distilled water and clean and soak with vinigar my hoses .
and warm soap for water holder and mask

Pat
 

brendapals

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thanks Pat,
Never thought of that, the hotel we are at tonight has a microwave, so I can heat up the tap water in that and let it cool before putting it in the water thingy.
Have a great weekend!
talk soon,
brenda
P.S. I'm heading out to sit in the hot tub for a little while now, might not even need the cpap tonight! just kidding, I only hope to be a bit pruney from it, and also very relaxed!
 
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lerg62

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Thanks to everyone for your answers, this is such a wonderful forum I don't know what I would do without it. I don't post much but read everyday and it has helped me so much.

Al, I can't wait to tell my brother that the "poop" he is smelling is his own breath coming back at him.... that is soo funny I know he will get a kick out of it and I bet he will try the mouth wash!

God Bless
Lerg
 

CindyM

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Lerg- I made that mistake once and only once. And I'd eaten spicy food, to boot. I was already in bed and too exhausted to get up again and rinse. LOL, won't do that again. If i could bottle my bad breath we could sell it for an alternative to mace! :lol:

Rose- I've always had soft pallet collapse - many people do, so I'd been on a CPAP for years. Earlier this year I went for a sleep study and they upgraded my old model and re-set the settings. But it has not been six months so my insurance won't pay for a new study yet, thus we don't know what settings to use for the bi-pap. The insurance said if it was proved medically necessary they'd OK another study but my vital lung capacities are borderline mild to moderate. If I drop into the moderate side before March of 09 I can get another study, which then proves the need for the Bi-pap.

The good news is that it is not my diaphragm. I had a pulmonary"sniff" test and even I could see things moving up and down just fine. It seems to be my upper chest muscles, so far. I am not sure if the back muscles and trunk affect breathing but I feel a lot of heavy twitches there. When I lie on my back or right side, it feels like worms are moving under my skin. And if I get really tired, my trunk muscles tremble so it looks like I am shivering from the cold. And I get the most awful muscle spasms in my right trunk muscles.

I suppose these muscles affect the breathing, if only a little. But it seems everything is just a guessing game, at best! :smile:
 

CindyM

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Thanks, Al, for reminding me how to keep the mold spores from my mask and tubing!

Brenda: Hope you are enjoying your holiday! I've used plain water in a pinch but I might not be the best example to follow, LOL. I am the one who totally forgot to clean her mask, remember! :lol:
 

sharonca

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I can't clean my bi-pap parts myself. I found out that my husband is just rinsing it with distilled water and not cleaning the tubing at all! Yikes. I'll show him this thread.

Sharonca
 

hopingforthebest

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bipap vs cpap

The RT told us that ALS patients use bipap machines and not cpap. He is coming for check up with my husband next week, I will have him clarify what he meant and then post his reply.

Patty
 
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