can someone afford to be put on a vent

Status
Not open for further replies.

DontShrink

New member
Joined
Oct 10, 2014
Messages
7
Reason
PALS
Diagnosis
10/2011
Country
US
State
Virginia
City
Lexington
and live at home on a regular income? (tracheostomy)

i attend clinic at Hopkins, and their answer was a resounding no.

just wondering if anyone has seen or heard different.
 
People do it. It depends a lot on your support system. The supplies etc are probably manageable but if you have to hire caretakers it will mount up fast. We have 2 members here with different experience. Diane H has been on a vent for years and has a website that is very helpful. Alsfrombothsides dot org
Santa Joe cared for her husband on a vent until his recent passing. Read her posts
Talk long and hard with your family before deciding
 
the caretaker cost was the main reason Hopkins said no...24/7 care within arms reach.

my wife is my caregiver, currently.
 
You might also want to consider what happens after you are on a vent. The disease doesn't stop. You essentially short circuit dying from respiratory issues-if you have 24/7 care and if everything goes right. You do not stop the dying of your nerves and muscles. That means you substantially increase the risk of becoming locked in, a state that many of us consider worse than death.
That means you are mentally there, aware of everything, but unable to communicate to the outside world-even with your eyes. Think long and hard about whether you want to take that risk.
 
Dontshrink what does your wife think about caring for you on a vent?

You do need 24/7 care, if the vent stops working even briefly, well so do you.

Your wife may be willing to increase her level of care, but she will have to sleep, and so you will need many family and friends to fill in the gaps and be willing to take care of someone on a vent, or you will need to hire home help to fill the gaps.

Debbie and Jane truly tell the vent story from both sides.

You haven't said here what kind of level of progression you are at now?

The way I figure it is, if your body is failing and the breathing is going last, then a vent is going to keep you alive but bedridden, possibly locked in. If your breathing is failing well before your body, then you may gain some good quality time by venting. Please be aware however that this is only my opinion, it's a very personal decision!

So many things to weigh up, and I would suggest that considering your wife as primary caregiver is the first important item, then finances.
 
As Nikki said, read Diane H's website regarding this. Especially the Safe Harbor section. www dot ALSfromBothSides dot org

Diane states that with Medicare Part B the cost is manageable.

She also states that going to the vent from the BiPAP gave her _more_ freedom. She is NOT bedridden, she goes to stores and rolls around her yard.
 
Greg I'm happy for Dianne, but there are also people here that have been on vents that chose to go off of them and die. I don't know the reasons, but I would suspect they have to do with the burdens on the family and caretakers and/or being locked in.
Everyone should make their own choice, but the risk of being locked in should not be minimizedl-it is a real possibility.
Incidentally, I happened to mention venting to the neurologist at the ALS clinic I attend.
They have treated hundreds of patients and he told me that not one patient has chosen to vent yet. I will also ask at Dr Appel's clinic in Houston when I go there as well.
 
Absolutely. But in general discussions about venting are negative. Diane and some of the folks on fb, and of course dr. hawking, are positive examples.

There has to be some balance.
 
thank you for the responses
 
Status
Not open for further replies.
Back
Top