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Thread: PEG and RIG

  1. #71
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    Oh dear Pink so sorry you are having such an awful time .
    I hope the hospitals up here are better , because if I thought they were the same it would put me off having the operation. I know they are all understaffed but the care of patients shouldn't suffer.
    Wishing you a speedy time up to Tuesday !
    love Chris

  2. #72
    Forum Member Lynne K's Avatar
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    Talking about indignity. When I had a toe joint replacement about 8 years ago, after a day or so I'd have to use a commode by my bed. The day staff nurses would pull the curtains around for my privacy. But the night sister gave me a firm hard nosed order to use the commode without curtains around which was totally insensitive of her and was embarrassing for me. I wondered how she would have felt in a similar situation. Some people are in the wrong jobs. They give our amazing NHS a bad reputation. Obviously the Government cuts have made things worse. Good nursing staff do their best but the less good take out their stress caused by a heavy workload on vulnerable patients. More money for our NHS is needed. Lynne
    Last edited by Lynne K; 22nd October 2018 at 09:39.
    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.

  3. #73
    Forum Member Twinkle's Avatar
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    Sorry to hear about your bad time in hospital Pink. Some nurses are aloof in their role, some are kind and really caring. When hubby has to have this op I won't be leaving him especially seeing as he can't talk well or spell well. My darling will be ok with me there.

  4. #74
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Pinkelle View Post
    Ellie I have insisted they don't try and give me too much. I get so full really quickly. I've had 500mls over 20 hours to begin with.

    I also started @25 mls/hour but only got 100mls (4 hours). However, I hadn't lost weight, you have, so I gradually built up to taking 500mls @125 mls/hr over 4 weeks..

    Are you tolerating the feed well - I hope you are...

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

  5. #75
    Forum Member Pinkelle's Avatar
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    Update... After being home only a few days I was re admitted. But I refused to go back to the hospital so they got me into the weldmar hospice where I come for clinic. I felt so poorly and breathing was bad. Chest infection. So I couldn't be getting any better treatment. What a difference. I've been here a week now and I'm slowly beginning to feel better. As soon as we entered the building I felt safe and calm.

  6. #76
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    Hi Pinkelle
    I am so sorry that you have been poorly . I have been thinking about you , and wondering how you were , I thought it strange that we hadn't heard from you !

    You do right to refuse to go back to that hospital you wouldn't have got better in there so soon . Hope you soon get well enough to go home. Sending a big hug

    Love Chris x

  7. #77
    Forum Member Barry52's Avatar
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    Hi Pink,

    I’m sorry to hear that you are poorly following your operation. I’ve always said that hospital stays result in departure with more trouble than we had to start with. One of my friends with MND got sepsis following a hospital stay.

    I’m pleased the hospice is taking good care of you and I hope you get home soon.

    Love Barry
    Iím going to do this even if it kills me!

  8. #78
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    Really sorry to hear this, but pleased that you are starting to feel better x

  9. #79
    Forum Member Terry's Avatar
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    Hi PInk;

    I too have been thinking about you. Sorry to hear you've had more troubles but I hope you are feeling a lot better.

    There is a world of difference between a hospital and a hospice for us that need more care.

    Get better soon, hugs, Terry

  10. #80
    Forum Member Ellie's Avatar
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    Truly happy you're being nursed with dignity & compassion Pink.

    Stay until chest infection is 100% gone and you've regained strength & vitality.

    Thanks for posting.

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

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