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adozi

Distinguished member
Joined
Dec 28, 2011
Messages
233
Reason
PALS
Diagnosis
03/2012
Country
US
State
KY
City
Louisville
I'm thinking about this, before the vent. The respiratory therapist at ALS clinic recommended it as an easier way to suction and a step towards the eventual vent, so my family can learn to care for the trach first and then the vent. Has anyone heard of this? I'm all about being practical and proactive, but i had a consult with the ENT, and She wants to put me under. I had my peg tube put in two years ago this August, because my FVC was in the 40s. My intention was to have no more surgery that requires being put under. I'm not sure the surgeon has any experience with ALS. She didn't ask about FVC, she just looked at me, saw i look normal, and that i wasn't breathing hard, and said that everyone would be more comfortable if i was out. I'm definitely going to email my ALS Doctor about this, but i wanted to vent and see what you all think. :) I think i heard that Hawking has a vent but doesn't use it, so he probably has a trache.
 
I also learned a new term, "respiratory toileting.!" disgusting!
 
yea that sounds discusting....but better than "hackin up a loagie" that Max uses.....
 
>but better than "hackin up a loagie" that Max uses.....

big disgusting grin taking that frome someone with bugs in their teeth! :)
 
The trach for secretion management seems to be becoming more common. I know of several people who have done it and if you are going to vent anyway later it does seem sensible to get it early. As you say your family will be used to it and so will you plus if something did go suddenly wrong it would be there for you to vent without having to have surgery let us know whatvypu decide!
 
I've tried to sign off and on, but i can't see the replies. It's been that way all week. I can see there are replies to my replies and my post, but i can't see any, including my own. Argh. Please email aedozier At gmail Dot com if you want, otherwise i'll check back next week. Thanks for your input. Wish i could see it.
 
Ashley, hit f5 or refresh and you should be back in sync ...
 
I also learned a new term, "respiratory toileting.!" disgusting!

Think "Repiratory Toilette" and give it a French accent. Sounds more like the actual meaning which includes all aspects of getting beautiful while your maid or valet lays out your clothing. Think Downton Abbey!
 
You are right putting a nice French accent makes sound so much better
 
https://www.alsforums.com/forum/general-discussion-about-als-mnd/15119-time-trache.html

.Tanks everyone especially Nikki who advised me via email. I'm going to do it. It's just a matter of anesthesia... Though i don't suppose being intubated while awake is very pleasant. One thing that the surgeon did say was that she could take her time if i was under general.. Well i don't want her to take her time i want her to be quick. So perhaps she is not the one for me. I also found the old thread above helpful. Especially the second page.
 
Steve Gleason got his trach
 
Oh, yea ... on the subject of "It's just a matter of anesthesia" don't forget the various discussions regarding propofol, such as this one. (just avoid wearing a single white glove...).

As regards "i don't want her to take her time i want her to be quick" - when have you personally made more mistakes? when 'being quick' or when 'taking your time' ... ? I understand your desire to have as little surgery as possible, but perhaps you should err on the side of caution?
 
I've been thinking, it's probably a quick procedure anyway. Emergency ones just take a few minutes. You're right about the propofol, I'm going to ask the anesthesiologist about that. That appointment is July 10th, procedure on the 24th.
 
OK. My husband and i watched a tracheostomy video on Youtube. No way am i going through that without general anesthesia. Yikes.

Is there any reason why i'll need suction more frequently than i do now? People say that, but i already need occasional suction. Is it possible pALS just don't ask for it as frequently as they need to before they get one?
 
all good questions, thanks for talking about this.
 
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