Trache and Vent question

[intuition]

Since ALS doesn't actually kill you but respiratory failure does, if someone is on a trache and vent then couldn't they live indefinitely?? for 20-30 years or even longer?? I'm confused as to why or how ALS could kill you if you were on a trache and vent. Would this only be from possible complications? (such as infections or pneumonia etc??)

[joelc]

You are correct. Being on a ventilator (with a trache) allows you to live indefinitely unless something like pneumonia causes problems. I have been lucky so far as I have not had any problems. If you are careful to stay healthy and suction properly this problem is minimal.

[intuition]

Makes sense... Thanks for the response.

PS- I've seen your site before and it's very informative, thanks for all the great info!

[Andy2020]

Originally Posted by joelc

You are correct. Being on a ventilator (with a trache) allows you to live indefinitely unless something like pneumonia causes problems. I have been lucky so far as I have not had any problems. If you are careful to stay healthy and suction properly this problem is minimal.

Hey Joel,

If someone on a ventilator decides they have had "enough" can they elect to have the ventilator turned off?

[joelc]

Yes, at least where I live you can. All that has to be done is call hospice and they will medicate you to make you comfortable while disconnecting the ventilator.

[sadiemae]

went to pulmo today, talked about trach, but when I asked about vent he said just trach. I am confused. We are not there yet, but depending on results of upcoming swallow eval, we may be looking at it sooner. I just started researching and it does look like a trach is used for swallow problems without a vent. His pulse ox is good and fvc is 55%, so basically doing good, he was just letting us know what might be next. Comments?? Joel??? thanks and HUGS Lori We have a PEG, though not using it much, still eating by mouth, and have Bipap,Cough Assist and The Vest. Is this another "get it before you REALLY need it?"

[LauraW]

Yes, get it before you can't breath without it. I wish Mom did that. We almost lost her when in the middle of the night she could not breath anymore. She got pneumonia and had to be rushed to the er. With ALS always always be one step ahead!

[joelc]

Yes, I fermly believe that it is better to get it sooner rather than later. If you do it before it becomes an emergency your recovery time is almost non-existent.

A trache has nothing to do with swallowing unless there are aspiration problems, then a cuffed trache tube can prevent food, or drink, from getting into your lungs.

I got my trache when my FVC was 30%. It has been a life saver.

[sadiemae]

We are going in for a swallow eval soon,because we are worried about aspiration. Our Pulmo at the VA is great, all for a trach. Lori

[Buddha Nature]

Thank you for all the wonderful information!
My partner is waiting to find out when and if he is getting a trach/vent!

[irismarie]

Now I am confused.
Lori, if the peg is to bypass the swallowing problems, why not use that?
Knowing all this is just round the corner, I am glad to hear this discussion going on;

[handinhand]

Iris that comes first,the bipap to save on the muscles ....but as they get weaker and weaker it is not sufficient to keep you breathing, then we have to decide trachea or no trachea.... I do not know yet... See where my body function is when it is time.... Most likely not if I keep progressing the way I have this last month..... Hugs, Linda

[Phil M]

Joel, or whoever...whats your thoughts on laryngeal diversion? Seems like it would make life a little easier than the traditional Trach?

[handinhand]

Phil, explain what that is ? Thanks, Linda

[Phil M]

Well, Linda. I don't know all the names, but basicly. The Trach is disconnected from the throat, so it goes to the lungs only, and what ever is in the mouth, or throat can only go into the stomach. It seperates the 2, so it is impossible to aspirate. You do loose your speech 100%