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Thread: new peg

  1. #1
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    new peg

    hi its a while since Ive been on here....busy coping with the every day things associated with mnd.My husband John had the peg fitted three weeks ago he has had mnd 18years and fought against the peg till three weeks ago.he spent two weeks in hospital after contracting an infection after a few days.Course then he said he wishes he hadnt had it done.Hes home now but for the first time in 18years hes feeling down and despondant in himself.He said he only wanted the peg as a way of getting extra fluids and the occasional feed when he was to tired to eat.His swallowing is a problem but he wants to keep on trying asa long as he can.However he feels like hes been pushed in to full feeding and its not what he wants.Now I wonder if its a step to far for him. I know he is getting the nutrients he needs but no one will listen when we say he doesnt want the feed every night he still wants to eat his soft diet.He lost 2 stone in six weeks which wasnt good but now he is piling weight on and hes very uncomfy.I have now cut the feed out because yesterday he sobbed like a baby saying things were being taken out of his control.I have cared for him on my own for 18 years and I wont see him unhappy anymore.Sorry for going on but I just had to talk to someone

  2. #2
    Forum Member jadedjohn's Avatar
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    Hi Irene

    Don't worry about posting on here, whatever you like that is what forums are for... To be honest your post has given me some long term hope 18 years is a long time to have MND. The thought of having a PEG is my biggest fear too, at the moment I'm saying no to a PEG, but whoj knows later on.... May I ask how old your husband is?

    Kind regards

    John
    http://www.jaded-john.net

    First onset Oct 2009, Dx'ed Oct 2010 at the age of 42

  3. #3
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    Hi Irene
    I would have done the same thing as you so don't feel bad. Mick has also been fighting having the Peg and has only recently agreed to have it and that is only because he was in hospital for his ventilator assessment and he saw first hand what can happen if they do not chose to have the Peg. He has only agreed though on the understanding he doesn't use it unless it is the last resort and he has told the Hospice OT and PT this, Mick says he can completely understand that John would feel like he no longer has any control. Mick may well change his mind when it comes to having the op, as he waits for his appointment. I think they have a lot to accept along this journey and coping for 18 years is a great inspiration to us all. You are both obviously doing something right. So keep on going with your instincts I say xx Ang

  4. #4
    Forum Member Jeannie's Avatar
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    I know he is getting the nutrients he needs but no one will listen when we say he doesnt want the feed every night he still wants to eat his soft diet.
    It is your husbands choice nobody else's. I know many people who have a peg fitted and just flush it through daily with water.
    Best wishes

    Jeannie

    Please donate and share forever grateful xx Please see the link https://www.gofundme.com/83tq5j-help..._co_campmgmt_w
    ______________________________________
    ALS onset June 2000, dxed July 2001, I am 40 yrs old.
    Living and loving everyday regardless of ALS although I do have my down days.
    I'm singing and dancing inside!

  5. #5
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    I am one of those who had the PEG fitted and do not use it for feed but flush it through daily with water. At least it means I am accustomed to it being there and don't have to worry about learning to cope with it - although I realise there will be another learning curve when I can no longer swallow sufficient to maintain weight and nutrition.

  6. #6
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    I also am debating have a peg. The Hospice I go to say have it done, Oxford say wait. Miranda seems to be taking it in her stride, John is finding it hard like it`s the begining of the end. I don`t know the answer but I suppose you sould take it as just a progression of your medication. I do feel for anyone having to make this choice. I hope when my turn comes I have the attitude of Miranda.

  7. #7
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    John is 62 he was in the army for 22 years and never had a days illness,never once saw a doctor all the time he was in.Then within three years of leaving his symptons started hes always been a positive man and not once said why me.He is feeling better now the infection is clearing and said it was the right way to go in the long run and Im sure things will settle down again now.John fought against the peg for over 12 years but constant dehydration and weight loss made him think again.He has never given up hope so you hang on in there like you said 18 years is a long time keep fighting it like my man hes says he wont let the bugger beat him .he can still eat a soft diet and we saw the hospice nurses yesterday who agreed with us about letting John do what he wants so I asked John and he said he will use the peg for extra fluids and occasional feeding.The peg itself is easy enough to use its not a problem,and its there now when ever we need it.Johns filled out quite a bit and doesnt really want to put anymore weight back on so we are playing it by ear now.At least he feels back in contro; again and to me thats important.We take everything in our stride nothing really gets us down this was just a minor blip and we all have those dont we,ha ha.Trouble is with the peg it cant be put on a shelf in the 'useless equipment' cupboard and thats pretty full now bet we all have one dont we.............useless neck collars,wheelchair cushion etc all of which are no good but the OT says try them anyway .So I hope today is a good day for everyone xx
    Last edited by Irene; 2nd September 2011 at 07:42. Reason: missed some out

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