Noninvasive ventilator vs. Invasive ventilator

[jemahiser]

I am a 56 y. O. man with full blown ALS. DX 5 years ago . I have decided against a feeding tube and an invasive (trach) ventilator . I know some people struggle with this type of decision. Some people are unaware that the uninvasive option is available. Just wanted some other patients thoughts. I am going to go as long as the N. I. will take me and then I'm done. The positive pressure system has kept me going much longer then a bi-pap would have. With the support of my family they understand that I
do not want to live like it would leave me. quality of life is a very personal decision.

 

[joelc]

You don't want to hear my thoughts as you seem to be convinced that you can't have quality of life with a trache and vent.

 

[haase]

What is a "noninvasive ventilator"?

 

[Al]

A Bipap is a positive pressure system. What other type do you have?

AL.

BIlevel Positive Air Pressure. Vpap from what I've been told is like a second generation Bipap. More bells and whistles but a Bipap just the same.

 

[Raul_Chicago]

These are all new terms to a lot of us. My dad is being tested for a bi-pap but the pulmonologist (from the 2nd opinion) suggested a VPAP, and I also hear that a trach vent offers longevity. I get the idea of the bipap, but does anyone know the difference. If someone has the trach can they still speak and eat regular food?

Thanks
Raul

 

[jemahiser]

so everybody has to feel as you do or they are wrong? I this was a forum? there are other options and point of views. You sound bitter joel. Your correct ALS doesn't have to be fatal but quality of life is also a persons right to determine. I respect your right to choose, respect mie. You have no idea what it takes to get me through a day.

 

[joelc]

Yes, Raul, I ate and spoke for 2 years after getting my trache. It is only recently that I have progressed enough I can't do either.

As I understand the difference between a bipap and Vpap, they are the same. Resmed patented the bipap name so no one else could use it so other companies called theirs a Vpap. It stands for Variable. Bipap means bi level. Same thing.

Without my trache and vent I would have died several years ago.

 

[Raul_Chicago]

Joel,

Thanks AGAIN for your wisdom and willingness to share!

Raul

 

[GlenBrittle]

I too am being fitted for a manual ventilator, which I will receive at my September rehab clinic visit. I debated my perceived pros and cons of the vent and when my pulmologist said it was an option for me it fit into my plans for the future.

I sleep with my bipap.

Glen

 

[sadiemae]

Raul, VPAP and BiPap are the same, just do not do CPap, as that is bad for most PALS. As Joel just said! Joel is the most NON bitter person I have ever come across . Glen, what is a "manual ventilator"?

 

[jemahiser]

I went through a clinical trial l with U Of MICHigan last year and it is a regular ventilator useing my nose instead of trach hole. I am sure this may not be for all ALS but it is new.

 

[joelc]

so everybody has to feel as you do or they are wrong? I this was a forum? there are other options and point of views. You sound bitter joel. Your correct ALS doesn't have to be fatal but quality of life is also a persons right to determine. I respect your right to choose, respect mie. You have no idea what it takes to get me through a day.

I am sorry if I somehow offended you. Too many people have been told there is no quality of life on a ventilator. I have said repeatedly that what I have done is not for everyone but you can have a very good quality of life. I do respect your right to think different. But I am living proof there is another side to living with a vent that they never tell you.

 

[jemahiser]

well if he is not bitter then be open to new treatment's

 

[jemahiser]

remember we are in the same boat

 

[joelc]

You should not ask for other peoples thoughts if you will be offernded if they dffier from yours . I am very sorry you took offense to mine. I meant you no direspect.