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    PEG operation.

    I have Kennedy's disease and am unable to swallow very well now so I chose to have the PEG fitted in order to give me the choice of whether I use it or not, I know my swallowing will deteriorate so it seemed the right time, for me, to do this. I found the procedure suprisingly simple and was out of hospital in two days, the PEG is easy to use and maintain and the support you get is very good. So if anyone is worried about getting one fitted you can rest assured that it is not a difficult thing to do

    #2
    Hi Jimbo,

    I have recently decided to have a PEG fitted and am waiting for a date. At my MND Care Centre you are an in-patient for five days. It surprised me when I was told that as I had seen, here on the forum, that people were talking of just a day or two.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #3
      Hi jimbo,
      Thank you for posting that reassurance. I'm sure a PEG has my name on it in a year or so's time.

      Comment


        #4
        Hi Jimbo, how was your PEG procedure done? Some way down the line maybe I'll have one but I don't need it now as I can eat almost anything that I want to. Thanks, Lynne
        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.

        Comment


          #5
          Hi Jimbo,

          What’s the criteria for the PEG? My husband doesn’t not have difficulties swallowing but his appetite has lessened since he cannot feed himself due to muscle weakness in his upper body, he cannot lift his arms to take food up to his mouth. Since being fed by a myself or one of our children he seems to not eat so much, whether this is because he is worried that we are having to do this for him or sheer frustration that he cannot do it himself. He is not a small man, love him, so no concern about him not eating enough but just wondered what other in the same situation do?

          Thanks
          Claire

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            #6
            I haven't decided yet about the peg. But I was told just one night in hospital.

            Comment


              #7
              Hi Claire,


              I understand your husband’s reluctance to be spoon fed - it can be highly embarrassing.


              There is no specific criteria for when/if a feeding tube procedure should take place.


              The general guideline for the procedure is if there is any difficulty with swallow or a weight loss - your husband is at risk of unintentional weight loss, irrespective of his cushions Sometimes an overall weight loss of 5% is quoted as a trigger for a feeding tube, but for many of us, 5% is too much to lose.


              However, other factors such as a decline in respiratory function or in manual dexterity are also important, not to mention the sooner rather than later mantra.


              Best wishes to you both.


              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


                #8
                Hi Sheila,

                Different hospitals have different guidelines as to the length of stay following a feeding tube - PEG, RIG, PIG - procedure.

                The important thing is the tube is used successfully in the hospital (even just with water) and you and a family member have been shown how to use it before leaving hospital.

                Take care,

                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


                  #9
                  Originally posted by Lynne K View Post
                  Hi Jimbo, how was your PEG procedure done?
                  Thanks, Lynne
                  Hi Lynne,

                  Your NHS Trust provides the following 'Guide to having a PEG':-

                  http://http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=17109&type=full&servicetyp e=Inline

                  Love Kayleigh x
                  Last edited by Kayleigh; 12 May 2019, 14:51.

                  Comment


                    #10
                    Hi Kayleigh,

                    Thank you for the link that you posted for Lynne. I should be having my PEG fitted at Salford (unless there are problems with my breathing) so I'll be reading through it carefully.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #11
                      Thanks for the link Kayleigh. I'm now clued up. 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.

                      Comment


                        #12
                        Hi Dina and Lynne,

                        I just happened to see it when I was 'doing some googling'. (It's one of the 'Patient Information Leaflets' that can be downloaded from the Salford Royal website).

                        I hope you are having an enjoyable weekend.

                        Love Kayleigh xx

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                          #13
                          I was only in hospital for just over half a day for my RIG.

                          Comment


                            #14
                            Hi Ellie,

                            Thanks for your reply, I love the term cushions, I will be adopting that loving term for my own extra carriage

                            My husband has lost between 2 - 2.5 stone since diagnosis in December but we put that down to muscle rather than weight if that makes sense?

                            He has great difficulty with both manual dexterity and breathing and is now somewhat reliant on his Nippy which he has been using for the last couple of weeks, at first just overnight but now more often than not in the daytime.

                            I cant imagine him considering a feeding tube as it just represents yet another thing he cannot do as a result of this poxy disease

                            Xx

                            Comment


                              #15
                              Thats quick work Martin, I suppose my PEG took longer because the procedure is different and I had previously had a gastric sleeve fitted some years back, which reduced the size of my stomach and made the op a little more complicated

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