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    PEG practicalities

    I just replaced my clip on my PEG line, not for the first time, and must remember to order more. If you don't already please consider getting spares like clip, end piece and line inhibitor. It beats waiting for a health professional. ๐Ÿ‘๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    Too right, always have spares for spares - I get mine in boxes and keep an eye on stock levels. xx
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #3
      Well when Stephen gets his UK fitting I will need to know where to get them. Looks like 30 week waiting list but not sure when the 30 week starts ๐Ÿ˜ฎ

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        #4
        I'd check that. Although I get a monthly order. Ask your nutritionist as mine is my first contact for changes to my Abbott order. ๐Ÿ‘๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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          #5
          Good idea. They are very quick to pop round so yes I will do that. Can't believe waiting list can be that long serious things could happen. Something else to worry about.

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            #6
            Originally posted by denise View Post
            Can't believe waiting list can be that long serious things could happen.
            Imagine if the tube suddenly split or was damaged somehow... Stephen would have to get his tube replaced PDQ.

            I don't understand why such a lengthy wait for a tube replacement, he has an established stoma site so it's a cut & pull of the old tube, a quick measure and a new tube popped in. Or does he need more than that? xx


            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            โ€‹

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              #7
              No Ellie you've hit the nail on the head. Can't be that difficult but if they leave it too long the consequences could be a lot worse. ๐Ÿค”

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                #8
                matthew55 what's a line inhibitor? x
                Diagnosed July 2020, ALS bulbar onset.

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                  #9
                  It's the two part bit closet to the hole.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                    #10
                    thanks x
                    Diagnosed July 2020, ALS bulbar onset.

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                      #11
                      I think that's what it's called. I can never remember! ๐Ÿ˜‰๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                        #12
                        I think it's 'officially' called an external fixator and the 2-part ones are elbow external fixators. It doesn't matter what you call them, but always good to know the proper name to order the right product.

                        When I had a long feeding tube for a few months, that's the one I had. xx
                        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        โ€‹

                        Comment


                          #13
                          Thanks Ellie now I might actually get some ๐Ÿ‘๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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