best time for trach

Kristina1

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If you already know for certain that you want a trach, when is the best time to get one? My team (of doctors) have stressed to me how important it is, for best outcome, to schedule the surgery when there is NOT an emergency/crisis situation. When I asked them when I should do it, they've basically said 'when you're ready,' but reminded me I could have a choking emergency at dinner tonight and end up with an unplanned emergent trach, and they said unfortunately that is the most common type of scenario they see because patients tend to put it off or just be undecided about wanting one or not until it's too late.

It took me 3 years to make a decision, but I've finally decided I do want one. So now I have to decide when.

I'd especially like to hear from trached PALS and their CALS. Do you wish you'd done it sooner or waited longer? What part of your life changed most dramatically?
 

Nikki J

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none of my family had one. My sister had not decided. She caught a cold and died from a mucus plug.

from seeing people here it seems similar to a feeding tube in that people often wait too long and have a difficult time because of it. I can, offhand, think of three people who were so debilitated when they trached that they were not able recover and died within a couple of months. The procedure itself, again like a feeding tube, is not long or complicated but in a very weak person recovering can be tricky
 

affected

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Sorry we don't to these in Australia so I can't answer from experience, but what I am wondering and if you don't know you could check is - are they saying you should consider getting the trach in early, but not saying you would then be on the ventilator, just have the trach in? If so that is not so life changing as being always attached to the vent. It might help you decide when is right for you?
 

Kristina1

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exactly Tillie, if I did it now for example, I would only use the vent at night. They said during the day it'd be capped and I'd go about business as usual. In that sense I'm motivated to go ahead witth the procedure asap, especially since the stronger I am the easier the recovery will be.

Where I hesitate is my concern about new issues it would cause me. For example I've heard it causes a lot of mucous requiring frequent suction. And I worry the surgery will speed my progression. On the other hand, I got my feeding tube early, and it turned out to be the best decision.
 

pittsburghgal

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Kristina, my husband ended up getting a trach on an emergency basis. He had a serious fall that resulted in a brain bleed. He quickly developed aspiration pneumonia and was in severe respiratory distress. He would have died unless I made the decision for the trach, which I did since he had very slow progression of his ALS up to that point. I knew this is what he would have wanted, although he was not conscious at the time.

He was on a ventilator in the ICU for 6 weeks but was able to be weaned off the ventilator. He lived for 5 years after this and only used bipap at night. He wore a speech valve during the day so he could speak normally.

There is increased suctioning for a few months initially after getting the trach but this is easy to do and dropped off a lot after the first year to only once or twice a day.

I think it is definitely better to do this earlier before an emergency occurs.

Sharon
 

patrick123

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My trach was planned. I made the decision based on FVC. When I hit 20% or below, I knew it was time. I didn’t want to wait for an emergency situation. I was home in ten days and, my caregivers were trained. It has been 2 1/2 years.
patrick
 

KimT

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Kristina,

I'm glad you made a decision. Not knowing what you will do is very stressful. You have age on your side.

The only thing that I can add is that I knew two PALS who planned on getting one but both died in their sleep. One was totally paralyzed and on BiPap 24/7 but the other was sudden, like Nikki's sister.

You're in my prayers and I'm sending positive energy for a successful surgery and speedy recovery.
 
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