Old 04-06-2018, 08:34 PM #1 (permalink)
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Default Responses from the ALS team at UCSF

Ended up in the ER here in San Francisco for about four hours yesterday for severe dehydration. Ran an IV to rehydrate me, did some basic RT tests. They wanted to keep me and out in an emergency PEG today. After consulting with everyone, decided to have me keep the scheduled appointment today and see what the neurologist had to say. All today decided I needed the PEG ASAP while I was still in fairly good shape, so will check in Sunday night and should have the PEG on Monday. A little nervous....
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Old 04-06-2018, 08:41 PM #2 (permalink)
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Default Re: Responses from the ALS team at UCSF

Oh, I am so sorry it got to the point you had to go to Emergency. I'm glad you're doing a bit better and got some fluids in you.

I regret you are at the stage where the need for a PEG is immediate. I am very glad you are getting it though.

Fiona
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Old 04-06-2018, 08:47 PM #3 (permalink)
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Default Re: Responses from the ALS team at UCSF

Don't be nervous. It will hurt like a ***** for a while. You'll live (briefly) in fear of coughing or sneezing.

But it quickly turns into just another appendage, an extra thumb sticking out of your belly.

Got mine a couple of years back, zero regrets.
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Old 04-06-2018, 08:50 PM #4 (permalink)
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Default Re: Responses from the ALS team at UCSF

Thanks for your kindness. I was only diagnosed with PBP in January, but this swallow issue is ugly as you all know. They want to inflate my weight. I can remember twenty years ago when I would have been delighted to weigh what I did today! Just not under these circumstances....
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Old 04-06-2018, 09:33 PM #5 (permalink)
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Default Re: Responses from the ALS team at UCSF

Quote:
Originally Posted by GregK View Post
Don't be nervous. It will hurt like a ***** for a while. You'll live (briefly) in fear of coughing or sneezing.

But it quickly turns into just another appendage, an extra thumb sticking out of your belly.

Got mine a couple of years back, zero regrets.
Mine never hurt (I'm Glad)

Haven't used in the 3 weeks I've had it except to flush! I wish tube was not so long (about a foot long)

Mine is high up almost chest height


Good luck
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Old 04-06-2018, 09:49 PM #6 (permalink)
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Default Re: Responses from the ALS team at UCSF

Is the PEG being done upstairs in GI/surgery, or downstairs in radiology, Idaho? When breathing is compromised, we generally recommend radiology.
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Old 04-06-2018, 09:56 PM #7 (permalink)
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Default Re: Responses from the ALS team at UCSF

Doing it in interventional radiology. I’m told they average 5 a day and are excellent at it. Hoping for a relative easy time. Averaged 64.2 on the RT tests. Good? Bad? They didn’t feel my breathing was bad. More of a weight loss due to inability to swallow.
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Old 04-06-2018, 10:51 PM #8 (permalink)
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Default Re: Responses from the ALS team at UCSF

if by 64.2, you mean FVC of 64%, yes, a good time to do on that score too. Or you might mean a raw number..you can always post the results here for more intelligent comments than we can give based on this, as you should always keep all your results at hand. For example, you can never assume the radiologist can see the test results, though s/he should be able to. Glitches are not unknown. Glad to hear the appointment is in IR.
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Old 04-06-2018, 11:24 PM #9 (permalink)
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Default Re: Responses from the ALS team at UCSF

My RT that I saw today told me she would be there with a bipap when they did the procedure just in case I needed help. She has been an RT for thirty five years she said! Felt more comfortable when she told me that
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Old 04-07-2018, 12:21 AM #10 (permalink)
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Default Re: Responses from the ALS team at UCSF

Hang on to that RT!
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Old 04-07-2018, 03:23 AM #11 (permalink)
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Default Re: Responses from the ALS team at UCSF

Sorry you're hitting that rough patch before getting your tube. That stay at the ER will make your new appendix an immediate friend. Dehydration will simply be a thing of the recent past. Don't worry too much, sounds like you're in the right place with experienced staff. My boyfriend had his PEG placement two month ago with a FVC that was somewhere between 40 and 50%. Had his new Bipap with him, in and out in 20 min, he was quite surprised the procedure already happened because he was knocked out for a couple minutes by a narcotic that would put him to twilight sleep and not take him under totally, haha, the look on his face! Best thing ever. Stay brave, we'll have you back in no time and in better shape.
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Old 04-07-2018, 12:14 PM #12 (permalink)
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Default Re: Responses from the ALS team at UCSF

It sounds like you'll be in great hands. You'll be so much better once you stay hydrated and can take in more calories.
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Old 04-07-2018, 12:56 PM #13 (permalink)
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Default Re: Responses from the ALS team at UCSF

Was wondering how your appt. went yesterday. I left you a visitor message on Thur. I'm glad you got things taken care of in SF. If you get the Peg on Mon. and back in town up north, and want some formula, till you can get some yourself. We have some extra to get you by in the short term. (We met last week at an ALSA support meeting, for those who might wonder.)
Message me through here if you are in need.

Ps. My tube was only sore for a couple of days ago.
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Old 04-07-2018, 12:56 PM #14 (permalink)
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Default Re: Responses from the ALS team at UCSF

I was wrong. Says FEV1/FVC IS 85.1, 84,6,93.3. Took three tests
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Old 04-07-2018, 12:58 PM #15 (permalink)
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Default Re: Responses from the ALS team at UCSF

Thanks so very much, Bob! You and your wife are wonderful!
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