Infections

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GilWest

Distinguished member
Joined
Mar 1, 2014
Messages
359
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
WV
City
Southern
Just keep coming. This is what comes when life is prolonged past the point of any logical reason. We now have a blue stained catheter and drainage bag from some bacteria. Just say no to long-term mechanical ventilation in most instances. DO NOT let a doctor talk you into it. It is a slippery slope and everything ends the same anyway, only way worse...
 
So sorry Gil.

I truly can't imagine what you and your mum go through.

I only know that I was horrified when Chris (with FTD) started talking about living 20 years on a vent. Then found out they do not vent PALS in Australia and I was honestly relieved.

I would never say no one should vent, for some it is a very viable proposition. But it is not something to be entered into lightly either, especially without full consideration of everyone and everything involved.

I believe it is why PALS and CALS need to check it out thoroughly fairly early (after the shock of diagnosis has worn off), and really talk through all sides of the situation.

ALS is so unpredictable, that a sudden emergency can see a PALS vented without full information, or a CALS feeling they have to make a decision in crisis without having discussed the implications fully beforehand and knowing their PALS full wishes.

Has anyone talked with your mum about her wishes regarding turning the vent off, or does she want to continue no matter what?

There are PALS who vent and live very productive lives, but then there are some in misery too :cry:
 
She is completely noncommunicative now. Her wish was to not be ventilated, but one yes from her to the doctors changed all previous plans...
 
I am so sorry Gil. have you talked to her doctor about how this can be reversed? do you have medical power of attorney? can you say with certainty that this is not her wish to continue in this state? It sounds like hell for both of you.
 
I'm so sorry Gil. I can't imagine how your dealing with this. As Barbie questioned above, is there any way to reverse this? I'm so sorry and I'm thinking of you.
 
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