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Thread: Peg consultation

  1. #21
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    Feb 2019
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    Hi Ellie,
    Thanks for explaining all that to me. Now I know the different ways for the peg and rig. I see the breathing nurse on Friday. It was ok last time. But I have noticed a strange breath comes out, usually after sleeping or a nap. Maybe nothing to do with Mnd. But I will mention it.
    Thanks again Ellie
    Love Sheila

  2. #22
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    Jun 2018
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    That's good to remember , the sedation.. good luck sheila xx I'm worried about the cut and tube i think, ive still got to get to grips with that. But then i thought people helping me to the loo would be awful,its just normal now.

  3. #23
    Forum Member Ellie's Avatar
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    Oct 2012
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    3,325
    Hi Lisa,

    Quote Originally Posted by Catsparkle View Post
    I'm worried about the cut and tube
    The hole is very small, only about 5-6mm wide.


    Quote Originally Posted by Catsparkle View Post
    i thought people helping me to the loo would be awful,its just normal now.
    Very true!! It's amazing what becomes "normal" isn't it??

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #24
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    South Coast
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    Haha, going to the loo has brought me and my ex closer i think..it's the massive pants wot dunnit 😂

  5. #25
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hi Lisa,

    I hope everything went well at your consultation yesterday.

    Love Kayleigh x

  6. #26
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    Feb 2018
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    Good to get the PEG in early. Tony is now using it for all meds and lots of fluids and x2 meals a day. He is now on thickened fluid and a pureed diet. He had no real problems post op. Take care

  7. #27
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    Jun 2018
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    Thankyou x the consultation was pretty horrible actually, a summary of my current and near future frailties including respiratory-although I knew Id been cleared , because I'd had to redo my night oxygen (the finger grip slipped off) she didn't have the respiratory data so had to go through that too. I don't know, I'm diagnosed autistic, so i loved the accurate information but yeah. Waiting on resp to decide peg or rig .

  8. #28
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hi Lisa,

    Sorry that the appointment yesterday was unpleasant. I expect you were glad to get lots of hugs from your lovely daughter afterwards!

    I hope you have a relaxing and enjoyable weekend.

    Love Kayleigh x

  9. #29
    Forum Member
    Join Date
    Feb 2019
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    199
    Hi Lisa,
    Sorry your appointment didn't go to well. It's one thing after another isn't it. And I hope your cold gets better soon.
    Love Sheila.

  10. #30
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    Jul 2019
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    Bournemouth
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    My MND started with swallowing and voice and has started to go to my limbs, luckily my breathing is still unaffected, my consultant has referred me to have one fitted ASAP as Iím struggling to drink enough, I wish you lots of luck, Iím looking forward to mine so itís less of a worry further down the line, I hope it all goes well, big hugs

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