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    PEG cancelled

    My PEG, scheduled for Tuesday 16th, has been cancelled.

    The MND team don't think it's necessary because I can still swallow and drink. This is even though my breathing is deteriorating.

    I am devastated.

    Doug

    #2
    Are you sure it's cancelled and not put back due to Covoid?

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      #3
      Oh Doug. It’s a big decision to have the procedure in the first place but to be told it’s cancelled is as you say devastating for you. I hope you get it sorted out soon.
      Have another man hug 🤗

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        #4
        I'm so sorry Doug.

        What exactly were you told by your MND team? Like Matthew said, it could be a Covid-related postponement and not that they've refused you the procedure - I should sincerely hope this is not the case, given your breathing is deteriorating 😡😡

        Sending you a ginormous hug.

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

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          #5
          It should be up to you to decide not them unless it's because of the virus. I'd be livid. Stephen can still swallow and drink but now he has the choice. I remember getting annoyed with a nurse back in the UK. She was de

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            #6
            She was determined I should have a flu jab and I was determined I wasn't. I complained to my doctor who stated they are there to advise us not insist. I'd complain. How dare they.

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              #7
              Will discuss by phone later this week.

              They say a third never need a PEG.

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                #8
                Considering the change it made to my life even when I was still swallowing fine it's got nothing to do with them. 😁x

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                  #9
                  Doug Carpenter And they have a crystal ball guaranteeing you will be in that 33% of people who don't have any swallowing issues, have they?? (33% seems high too, but that's by the by) Sorry for being facetious, but that makes my blood boil... A feeding tube is often put in early as an insurance policy.

                  Good luck with the call Doug and remember to have your questions written down before the call.

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

                  Comment


                    #10
                    Oh no Doug,

                    So sorry about this. Its a hard decision to have the procedure so to have it cancelled must be so upsetting.

                    My swallow is fine at present but I was advised to think about if and when I wanted one so it didn't become an emergency. Forgive me if I'm wrong but I thought it was best to do it before eating and drinking became difficult. I hope you get some answers this week.

                    Sending you love and big hugs,
                    Debbie x

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                      #11
                      Oh no Doug. That is such a blow. It does seem odd that they thought you should have one and now they don't.
                      Each day is made easier with a bit of humour.

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                        #12
                        Not good Doug. Haven’t you got enough going on without messing you about. I hope that they put it back on their calendar for you. Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

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                          #13
                          So sorry, Doug, if you were keen and ready for it. Like you, I am getting mixed messages about it from different people. The registrar has been encouraging me to get it done although I can still swallow and not losing weight, but specialist nurse was discouraging. I don't fancy having it at all, but the registrar said it was good to get it done if you're having any breathing difficulties, although so far my blood gas tests for CO2 have been okay.x
                          Diagnosed July 2020, ALS bulbar onset.

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                            #14
                            Hi Heather, I’ve had mine done about 14 months now before I needed it, but I’m glad now I had it done I just flushed the tube the first 8 months but now use it more or less full time now, I’ve kept my weight on which wouldn’t have happened without it, I would encourage anyone to have it done if possible.hope Doug gets his done in the end fingers crossed for you Doug x
                            Janette x

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