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Thread: PEG operation.

  1. #1
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    Talking 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. #2
    Forum Member Gillette's Avatar
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    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.

  3. #3
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    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.

  4. #4
    Forum Member Lynne K's Avatar
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    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.

  5. #5
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    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

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

  7. #7
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Kayleigh's Avatar
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    Quote 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; 12th May 2019 at 14:51.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  10. #10
    Forum Member Gillette's Avatar
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    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.

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