difficulties with bipap

[Neph]

Hi,

I have a question about the bipap.
My mum was at the hospital in April and August and they advised her to use the bipap to get used to it, though on both occasions they said it wasn't necessary yet. Still, my mum is very tired and sleeps a lot, so I guess the CO2 level might be quite high (since the doctors didn't notie any deterioration between April and August, the next appointment is in January).
My mum refuses to use the bipap because she panics; she won't use the mask, and if the air comes in through the nose she says she can't breathe anymore.
She made me try it myself and I have to admit that it is just terrible, I couldn't breathe either. If the air blows into you nose all the time, how can you exhale? Sorry, I know this question might sound stupid, but I couldn't exhale either.
Do you have any suggestions? Are there bipaps that stop blowing the air after a short time so that you can breathe out the air?
Thank you and all the best to you.

 

[cjack555]

My wife couldn't use the mask but took to nasal pillows after a short while. My impression is that ALS patients can't start to soon. It really helps my wife.

It should have a higher pressure for inhale and a lower pressure for exhale, for example 10/5 (I think that’s inches of mercury). My wife started lower than that. Your mum's may be set with to high a pressure. Starting at a low pressure so she can overcome it may be the answer, then raise the pressure later on. It should cycle based on the pressure the patient is putting on the machine, I wonder if hers is working right.

What pressure is it set at?

Chuck

 

[Al]

It sounds to me like it is not working properly. It is supposed to cycle to give you a chance to exhale. Call the Resp. Tech or Pulmonologist.

AL.

 

[sisgldnhr]

bipap/nasal pillows

I have a question about the nasal pillows. I've gone to the med supply business on numerous occasions asking for the nasal pillows for my husband. They refuse to sell it to me....they've told me that since my husband is on a bi-pap for ALS that the air pressure is just too much for nasal pillows. And then I read on here that other PALS wear them!?!? It makes me wonder if the med supply business knows what they are talking about! I was hoping that my husband could use the nasal pillow as an alternate just so we could get the open wound on the bridge of his nose healed. We are on our 3rd mask and all them have been a problem as far as pressure wounds.

Sis

 

[cjack555]

Try here

http://www.cpapsupplyusa.com/CPAP-D...&match_type=&gclid=CLHDmvbirpYCFQv7agodhR2aLw

My wife uses nasal pillows and a chin strap to keep her mouth closed when she is asleep

Chin strap here

http://www.cpapsupplyusa.com/CPAP-D...-Accessories/CPAP-Mask-Parts/Chin-straps.aspx

Chuck

 

[jsmida]

Is a Bipap and Cpap machine the same thing? My mom has had one for a few years due to snoring. She recently since Sept has had a hoarse voice, slurred speech and now has problems clearing phlegm out of her throat. Thing is the neurologist can't give a definite diagnosis of ALS because she doesn't have enough symptoms. What other symptoms would put her in the category of having ALS if she most likely has bulbar onset?

 

[Al]

CPAP is continuous positive pressure and is used predominantly in obstructive sleep apnea to keep the airway open. A Bipap is a bi level positive pressure machine. It has a high enough pressure to inflate the lungs fully and then cyvles to a lower pressure to let you exhale. This cycling allows the breathing muscles to rest and removes CO2 and provides enough O2.


AL.

 

[jsmida]

Thank you very much for the clarification.

 

[Neph]

Hi,
thanks a lot for your answers.
It all happened as could have been expected.
My mum fell into a CO2 coma a month ago. The last days before that her state deteriorated on a daily basis.
My mum and I had talked about a trach before, so she decided to get one. Strange enough, but she could live with the idea of a trach, but didn't want to have anything in her face.
She's been in hospital now for a month, but she will be able to come home in two weeks, and I am more than glad about it.
I know that many of you do not want to have a trach, but I was relieved when my mum agreed to ahve it done. I just couldn't bare the idea of her slowly suffocating. Now she's already chasing us around
The onyl problem is that she is in a special part of the hospital called 'weaning station', they're trying to wean her off the machine because both O2 and CO2 are brilliant and all the docs say she could well stay off the machine during the day, but she simply refuses to try it. One of the nurses fooled her though. She stopped the machine because she had to clean the trach, and then didn't turn it on again, and talked and talked with my mum, and 15 minutes later my mum suddenly noticed it and panicked again.
We will have nurses at home and they will continue to try it. In Germany with a trach, you have to get nurses, otherwise you'll have to go to a nursing home, but that's something that I have never considered. I want my mum here with us, I want her to be with us as long as possible. I have read what has happened to Del and I cannot express how terrible I felt. It's unbelievable how people can treat a person like that.
I only hope that my mum will get a bit stronger when she comes home so that she can maybe walk again (before she fell into the coma, she was still able to walk), her arms seems to be unaffected so far.
Lots of you are opposed to a trach, but I have also read the positive reports about it. We should never lose hope, because losing hope would mean the end of everything that life is worth living for.
Sorry for posting so much, but I just had to post it.
Take care, all of you

 

[joelc]

I am so thankfull she decided to get a trache! It gave me my life back. I personally don't believe in weaning someone off the vent, ALS is a progressive disease which means it gets continually worse, not better. I don't understand why they want to punish her by taking her off the vent. I say to leave her on it and she will do much better. Good luck at home!