BiPap advice? - Page 2

GlenBrittle · 09-01-2009, 10:24 PM

and I will ad to what Joel says who adds to what Beth says about CPAP.

The CPAP helps your breathe , but differently. CPAP - Constant pressure helps to keep your soft pallette from collapsing into your throat , and cutting off your air. When this happens , your brain must wake you from level 3 sleep (the good stuff) to level 2 so that the soft pallette will tighten up and retract. Snoring happens at this point.

The Bipap forces the air in , and the gives you a chance to breathe out by lowering the pressure.

Erica, you just need to keep trying. I think its normal for you to have problems adjusting to it. After two weeks , take it back to have the data extracted from it. With that info , they can program it to better suit you.

My BiPap gets cleaned once a week , hot water & vinegar . The mask gets cleaned more often if I sneeze a lot.

Glen

Alida1004 · 09-01-2009, 10:31 PM

BIPAP - cleaning and maintenance suggestions:
Mask should be cleaned daily with mild soap on a soft cloth, rinse properly with damp cloth and dry completely.
Rinse container and change water daily, demineralized water should be used in order to avoid calcium build-up.
On a weekly basis, container and tube should washed in soapy lukewarm water. Rinse tube thoroughly and the metal base of container should be soaked in lukewarm water with 3 tbsp. white vinegar for approximately 20 minutes and then rinsed thoroughly.
Our BIPAP machine cost a total of $6,025.00 - our insurance covers a maximum of $3,000.00. Pretty expensive equipment but very necessary, it has helped Angelo quite a bit. Finally found a mask which does injure the bridge of his nose. This mask covers only his mouth and has two little (very soft) tubes which fit in his nostrils. This one works very well for him.

BethU · 09-01-2009, 11:08 PM

Thanks for the additional info and also the cleaning instructions. I have been doing a very haphazard job of cleaning the tube especially, so it's good to know the whole routine.

Joel ... not all BiPaps have that back-up. My pulmo wrote my prescription for the "BiPap with back-up" last November. Blue Shield approved only the basic BiPap, and specified "without back-up." I find my cheapo model available online for much less than $6,000. I think in the $1,500 to $3,000 range. My ALSA rep has been climbing the walls trying to get me the back-up type. I've given up fighting them about it ... you can only fight on so many fronts at once, especially without speech. Life is too short ... and it ain't getting any longer!

I have only now ... eight months after getting my PEG ... gotten my insurance to admit they have to pay for food supplements for the tube, since Medicare pays for them and I assigned my Medicare benefits over to Blue Shield. (Dumbest thing I ever did.) They are supposed to cover everything Medicare does, plus extras. HAH! So I'm out of pocket $4,000 on the supplements since January and there is no way they will reimburse. Had a four-month fight to get a leg brace approved: Blue Shield declared it "wasn't medically necessary for ALS."

Enough whining from me! But indeed they do have BiPaps without back-up. I'm just lucky they didn't try to stick me in an iron lung!

GlenBrittle · 09-01-2009, 11:35 PM

Hi Alida,

Great to see you on the forums. Please do not be shy to ask any questions. Remember , what you think is a dumb question is worse if not asked.

Say Hi to Angelo for us.

Glen

joelc · 09-01-2009, 11:37 PM

Beth, somehow I knew you would disagree with me. I said most, and all the ones I was aware of. I will think twice before saying anything again. LOL.

thelma313 · 09-02-2009, 06:12 AM

Quote:

Originally Posted by KinzaDAF

I know Dad isn't moving enough air and probably is easily tired, but where does the 62% FVC rate "put him" with his ALS? I'm worried about him.

Debbie

Debbie, I know it's hard not to worry when you hear percentages that sound low. Does your dad have a good lip seal because if doesn't that can give a lower percentage but not necessarily reflect the true lung capacity. My dad has been hovering around the 50% mark for quite a while. He is now at 47%. When I first heard his FVC was at 50% I also worried that it was very serious but that was a year ago so clearly his lung capacity has not declined very quickly since then.

Good luck with everything. Please feel free to ask as many questions as you need to!

Blackpool · 09-02-2009, 11:59 AM

Hi Erica,Iwash the mask daily with a face cloth and hot soapy water, use fresh distilled water everyday in the humidifier. Once a week I wash the hose ,mask and wipe casing etc with hot soapy water and air dry. If you have a cold or infection wash with vinegar water, the head strap can be washed as needed. It sounds like you have the nose mask and you might need the chin strap if you mouth breath while sleeping, if you are having troubles sleeping ask at the clinic if you can take something mild to help you fall alsleep. I changed to a face mask and mild med at night and now manage all night. Even if you are only using the Bipap for an hour or two while watching TV it is helping, it took me awhile to get used to it.

BethU · 09-02-2009, 01:26 PM

Oh, Joel ... Beth, somehow I knew you would disagree with me. I said most, and all the ones I was aware of. I will think twice before saying anything again. LOL.

Sorry, am I really such a beeyetch?

Please don't "think twice" ... then who would I have to argue with ???

lisaann1170 · 10-19-2009, 05:28 PM

Quote:

Originally Posted by thelma313

My dad has been hovering around the 50% mark for quite a while. He is now at 47%. When I first heard his FVC was at 50% I also worried that it was very serious but that was a year ago so clearly his lung capacity has not declined very quickly since then.

Thank you for writing this! It's exactly what I needed to read today.