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    PEG or no PEG

    I have read a lot about PEG and I am seriously considering not having it done, I can still eat although about half the speed of my partner.
    Does anyone know of any one who has refused the PEG, and how they faired afterwards, will MND stop you swallowing eventually or does the swallowing mechanism keep operating, my MND visitor really wants me to have the PEG, but I do not want my body interfered with, I really need some input.
    Thanks

    #2
    Hi ks,
    IMHO if you decide to have the PEG fitted,it is best done when you are fit and healthy. Two reasons: post-op recovery is easier and you can start to push up your calorie intake before any weight loss.
    I have a PEG and swallowing isn’t really an issue; it’s more of a chewing problem as my tongue doesn’t work well enough to move food around in my mouth. I still eat but get nowhere near to the nutrition I need and so have feeds to supplement my intake.
    Ellie.
    ā€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ā€‹

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      #3
      Hi KS,
      You have posted this in PEG feeding problems aand now removed it and created a new thread with a slightly different title.

      WHY?

      You have 2 replies on the other thread which now stand answering a question that isn't there. How strange.

      john

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        #4
        I have replied on PEG feeding problems, thanks, and I removed it to get more replies
        Last edited by koolsilver; 21 July 2013, 15:04.

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          #5
          Hi Pete,

          If you look back up where you posted your reply before you will find there is no longer a KS post.

          john

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            #6
            Hi KS,

            Like Ellie I have had a PEG fitted early for the ssame reasons.
            Op was simple and conscious all the time. Took a couple of weeks to settle down to the feeding/toiletting regime but I wouldn't want to go back to pre PEG days.
            Put it off until you are too weak or your breathing has deteriorated too much and they won't be able fo do it. Then you are in trouble.

            Ian

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              #7
              Pete still manages to eat and doesn't have a peg. He has bulbar mnd strain, and he will give you lots of wonderful info on how he maintains his weight.
              hope this helps you to weight up all the pros and cons
              XXXXXDebbieXXXXXXX

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                #8
                Thanks, I am going to attend a nutrition clinic to learn more, if I am going to do this PEG I don't want to leave too late as you say.
                My breathing is OK, my lung capacity is about 55%, so it getting critical now.

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                  #9
                  My husband has been told his FVC is too low for a PEG or RIG, but he can have a POG procedure. The end result is the same, but a radiographer inserts the tube via his throat and tracks it down by x-ray then he has a local anaesthetic in his stomach to bring it through. It's obviously a bit more traumatic & uncomfortable, but still means he gets a feeding tube.

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                    #10
                    Thanks I am going to a nutrition clinic where I will probably make decision I just hope I have enough lung capacity, although I was told there is a surgeon who can do the PEG insertion while you are in the sitting position!

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                      #11
                      I posted loads of times about my sister in law who preferred pureeing her food and putting it through the peg...look back at those threads, hopefully they will be helpful.
                      best wishes
                      XXDebbieXX

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                        #12
                        I am having the PEG fitted on the 27th August,

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                          #13
                          Make sure they put contrast dye through it and x ray you after, before they start feeding or medicating you through it.

                          My mum died as a result of the operation, three days later because the peg leaked and the food and meds went into her diaphragm not her stomach. Peritonitis is listed as cause of death. This is a known complication from the procedure, apparently, that we were not told about. The hospital is not responsible, apparently.

                          She was 13 months post diagnosis and was still able to stand, speak, and sit unsupported.

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                            #14
                            Good luck Mike, hope the procedure goes even better then expected, and follow Lolly's advice, be your own advocate.

                            CCx

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                              #15
                              Thanks for that advice I will check to see if they do the test's after the op.

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