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Thread: PEG or no PEG

  1. #11
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    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

  2. #12
    Forum Member koolsilver's Avatar
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    I am having the PEG fitted on the 27th August,

  3. #13
    Forum Member Lolly's Avatar
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    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.

  4. #14
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    Good luck Mike, hope the procedure goes even better then expected, and follow Lolly's advice, be your own advocate.

    CCx
    .

  5. #15
    Forum Member koolsilver's Avatar
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    Thanks for that advice I will check to see if they do the test's after the op.
    Cherish each moment for they are as precious as You.

  6. #16
    Forum Member koolsilver's Avatar
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    IMG_0017.jpg
    this is me back when totally fit, this crow landed on the roof of my car and when I went to get him off the roof he came towards me I lent against the car, and he walked onto my shoulder.
    Cherish each moment for they are as precious as You.

  7. #17
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    Hi Koolsilver

    Pleased to see that you are getting the PEG fitted.

    It was the best thing my mum ever did and she had it done when she was as well as can be with MND and only fluids and her meds were going through it at first.
    Her swallowing has become worse she coughs with every fluid and food now so she is now on peg feeds only.
    I am so pleased they did it when she was well as it has been a massive advantage, they won't fit the PEG if you are not well enough.
    My mum is getting her breathing checked as she is struggling more now than ever, back in february her breathing capacity 98% but I don't think that will be the case this time.

    Well Good Luck with the PEG I'm sure it will go well for you and you feel a benefit from having it done.

    My mum always says that she wouldn't be without the PEG now.

    Sending lots of love and best wishes
    God Bless
    Jo x

    P.S. When were you diagnosed?
    The emotion that can break your heart is sometimes the very one that heals it.......

  8. #18
    Forum Member koolsilver's Avatar
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    I have decided to have the PEG feeding tube fitted.I was Diagnosed in April 2013.
    It will be fitted if they have a bed, next week, I really did not want this I do not like people messing with my body it has done really well up to now, but hey this disease does not leave much room for options.
    I am just not getting enough fluids into my body at the moment, due to swallowing and choking, eating food I am slow but I do not choke, I do not know what happens to your Epiglottis but mine leaks just when you least expect it causing a traumatic choking fit, I cope with quite well now, but if there is anyone around it is quite shocking for them.
    Last edited by koolsilver; 25th August 2013 at 16:01.
    Cherish each moment for they are as precious as You.

  9. #19
    Forum Member Terry's Avatar
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    Hi Kool;
    I think it's wise and takes any worry of feeding etc. away. It will probably take a couple of weeks to settle down but then be fine. Keep us updated and tell us what the nurses are like.
    Love Terry

  10. #20
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    Thinking of you. Hope there was a bed and that the procedure went well.

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