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    Problem with PEG

    My dear PEG has broken in the same place as last time but do you think I can get a spare PEG end? District Nurses must be great if you're old or have dementia but they are clueless about feeding tubes and even the ward that I had it fitted at couldn't help me. Is this part of population reduction? Any ideas people?

    #2
    I know I can't help here because Stephen hasn't had his done yet. How did you get it sorted last time? How on earth did you damage It? I didn't think you had it fitted that long ago! Sorry I'm only asking questions but I thought these things should last for a few years. 🤔

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      #3
      Hi Matt, I’m not sure, it maybe the area you’re in. You really need to get onto your GP about this. I was allocated a care professional who deals solely with my PEG when I had the op. Very strange that the ward can’t help either. It’s population replacement not reduction 😂
      Best wishes Jerry

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        #4
        Hi. Which bit has broken? Mine has a V shaped end to screw the syringe etc into. This is a weak link and mine has broken two or three times. fortunately it is easy to replace. I get my syringes from Nutricia and asked them for some spare ends. The MND nurse or dietician should also be able to supply them also. I always keep a couple of spares.
        Best

        Robin

        Diagnosed 05/2017 Familial ALS Limb onset

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          #5

          Short answer is yes, spares are available, whether or not you'll be able to get them is another matter!

          When you say the "end" breaks, is it the cap or what?

          If you know the brand of tube, that would be helpful and we can get the product code for your Nurse.
          For example, these spares are available for Freka tubes:

          Freka spares.jpg




          Love Ellie.

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

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            #6
            Guy Yes, it doesn't take much for the port connection to break - don't be over zealous in connecting the syringe, they're not screwdrivers 😁
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Thanks everyone, I stole the last spare when I left after my initial op. Naturally I didn't take note of the make as I assumed that there's only one! See my mistake? Great call about the GP I will get on to them tomorrow. Good thing I have a few nurishmants and can still swallow. Thanks again x

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                #8
                I remember being told not to try to screw the cap in fully - it’s not meant to go in all the way! Might that be the cause? Hope you soon access a stash of spares. Whoever supplies your syringes should have an emergency contact?

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                  #9
                  You would have thought that. Sadly not.

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                    #10
                    Contact your Dietician, mine sorted mine, rang district nurses they didn’t have a clue x

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                      #11
                      She's on holiday

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