Is it possible to pass away at night while using a CPAP / BiPAP?

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Just A Guy

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I'm just wondering because my dad does not want to vent. During the day, someone will be with him, but at night is it possible that he could pass away without anyone ever knowing?
 

ottawa girl

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If he is alone at night, then it's possible, as there is no one there to know. Someone could die at night, even if there is someone around... Happens ever day in hospitals, and often people die in their sleep, while their spouse is right beside them.

I really do not understand your question. Should someone be with an ALS all the time? I think so, except perhaps in the early stages. I know I would not want to be left alone, especially if I had a peg and could not walk very well or have use of my hands.
 

Jane

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Yes it is possible, My sister passed during the night with her BiPap on. We were with her and called her night nurse to check with stethescope. I had checked her pulse and could not get it. Was pretty sure her suffering had ended.
Also passing was gentle and peaceful.
Jane
 

Just A Guy

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Yes, someone is with him. He does not want to vent, that is why I am asking this question. I honestly don't blame him. He was a very active guy, the type that's always working / doing something productive. Now all he can do is sit around and watch TV, he tries to get some paperwork and stuff done and read stuff, but it's hard to do that lying in a bed. So that is why I was concerned about the BiPap. I can understand, why he doesn't want to vent though. Is there any alternative, like a non-invasive vent where the patient can still move around and talk to people and everything? Correct me if I'm wrong, but speech is impaired in an invasive vent right?
 

tdamess

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thier are 2 things i know of , not sure of the names but spelling is bad so someone should come along and correct me .... triogly and then i think another is called pacer
 

Ms. Pie

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A DPS also known as a Diaphram Pacing System but this is still in the trial phase from what I understand in regard to ALS.
 

Just A Guy

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Thanks for the replies guys. I'll do some research on them
 

tdamess

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yes your right it is still in trial doctor told my son yesterday
 

tmasters

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Although there are trials to determine whether the Diaphragm Pacing System is beneficial, the FDA has approved it for ALS under HDE. I had mine implanted in April 2012 not under any kind of clinical trial and my insurance paid 100%.

Trilogy is a brand name for a particular Philips ventilator. It can be used as a bipap and also as a ventilator after the patient is trached.

-Tom
 

marypat

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speech is not always impared with a trach and vent, like everything else it depends. on airflow, vocal cords etc
 

CAHPAH

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Just a Guy
Just as a FYI. My wife has used the Trilogy 100 for almost two years now. It has a six hour battery and is realitivy light weight. It has allowed her great mobility. Just like your father, my wife chose not to have a vent and we where informed the the Trilogy might extend her life. Currently she is 100% dependent on her Trilogy to breath and there is no doubt it she is still with us because of this machine.

The down side is that the Trilogy, however nice, is not a cure for ALS and it has continued to progress. When she decided not to get a vent I thought we would not have to worry about having a discussion about when to take her off of some machine, but since the Trilogy is working so well, we had to talk about that just the other day.

Best wishes to you and your father. He is fortunate to have you by his side
 

Just A Guy

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Just a Guy
Just as a FYI. My wife has used the Trilogy 100 for almost two years now. It has a six hour battery and is realitivy light weight. It has allowed her great mobility. Just like your father, my wife chose not to have a vent and we where informed the the Trilogy might extend her life. Currently she is 100% dependent on her Trilogy to breath and there is no doubt it she is still with us because of this machine.

The down side is that the Trilogy, however nice, is not a cure for ALS and it has continued to progress. When she decided not to get a vent I thought we would not have to worry about having a discussion about when to take her off of some machine, but since the Trilogy is working so well, we had to talk about that just the other day.

Best wishes to you and your father. He is fortunate to have you by his side
Thanks for letting me know. Can you tell me a little bit about the Trilogy machine if you don't mind. What kind of things can your wife still do. Can she speak? Is she mobile? What about eating? I assume it has to be through a peg. In other words, is the Trilogy machine like a face mask that does not allow one to speak and such?
 

Just A Guy

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A DPS also known as a Diaphram Pacing System but this is still in the trial phase from what I understand in regard to ALS.
From what I read, the DPS seems like it would allow the patient to breathe without any sort invasion through the trachea. Does this mean the patient will be able to move around and speak and such.
 

momap53

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Phillips Respironics makes the Trilogy which can be used as a BiPap or a vent. There are alarm parameters that can be set to summon your CALS if there is a problem and you are unable to communicate. It is portable on the back of a PWC and is good for traveling because of the battery. (Mine is attached with a couple of crampions on each side so that it easily articulates with my chair.) there are a variety of masks available. A Respiratory Therapist will help to select the mask type that is most comfortable. I use nasal pillows. I can wear my glasses to read, I can talk, and even drink while wearing them. Use your search to see photos on line of the variety of options that are available. You'll also find more info on the web about this particular model.
 
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