Responses from the ALS team at UCSF

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KimT

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Great breathing numbers......all within normal range!
 

Idaho2790

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I know nothing about that but thought they were ok. Thanks for confirming
 

Firefighter58

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I had my tube put in, no pain at all. A nurse come to my home the next day and showed how to use it and care for lr. As simple as that no muss no fuss no pain.
Al
 

Idaho2790

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Getting the tube tomorrow. Waiting now for the contrast. Have to try and swallow 2 cups by mouth in about 30 minutes. If that won’t work, they will put it down a tube in my nose!! Sounds awful. Hope I am strong enough to handle the swallow.....
 

Idaho2790

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Doctor from IR just here. Says will do procedure tomorrow but under full anesthetic. Can’t say why but will have tube down my throat. “The Team” has decided I need that. Any ideas why?
 

GregK

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With your FVC numbers? No clue.
 

lgelb

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I would ask why and not stop asking until the reason made sense to me.
 

Firefighter58

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That was never mentioned to me at the time. I have never heard of that for ALS, tube in the stomach is good for me.
Al
 

Romeosc

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I have PEG tube and never used it except to flush it daily....
 

Idaho2790

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Hope they take me by 4:00. Also planning to keep me until Friday or Saturday to adjust feedings. Must be something going on that I’m unaware of. I woke up choking yesterday, but no aspiration, etc. tried to eat ground turkey and gravy for lunch earlier. I think that gritty meat got stuck on my teeth and then went down with saliva when I slept. Only thing I can figure.
 

wishmobbing

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Best of luck for the procedure and everything else in the hospital!
 

whereswaldo

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I hope all is going well, we are thinking of you. The offer still holds, if you get back to town and need formula.
Are they keeping you longer to make sure you have enough fluids going through you? That would be my guess. Specially since Thur was the second time to the ER.
 

Idaho2790

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Finally did the PEG at 8:45 tonight. I was awake the entire procedure. Even sent the RT home. Said wasn’t needed. Now talking about sending me home tomorrow.....hard to know what will happen. I just have to wait until the ball starts rolling I guess. In pain. Waiting for someone to order pain meds
 

whereswaldo

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Glad to hear that so far everything is working out. Hopefully it works out and you get to go home tomorrow.
 

wishmobbing

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They do keep it exciting, don't they? Glad the procedure went well, hope the pumped you full of pain meds by now and you're able to sleep well.
 
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