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Hospital tomorrow for PEG procedure

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    Hospital tomorrow for PEG procedure

    Good morning,
    So tomorrow is PEG insertion day for me.Ironically I have struggled all weekend using the NIV.I just kept coughing once it was in place and I lay down on my side.Last night within an hour I woke 3 times coughing my head off.Didn't cough during the day.Ended up hot and bothered and so tired so had to leave NIV off and slept well with no coughing .

    So it could be positional?.I have had the NIV for several weeks and averaged about 5 hours with it on overnight.

    I need to take it to hospital with me and will check with respiratory team as to why they think I am not tolerating it.
    I do know my voice is weaker, dry mouth persists at night,swallowing now getting affected but tolerating normal diet at the moment.Appetite decreasing with weight loss( got supplements which I dislike as sweet).
    A year post diagnosis this week....still making the best of every day.

    Best wishes
    Mary

    #2
    Stay calm and try not to worry. All will be well. Stay Strong ๐Ÿ‘๐Ÿ˜๐Ÿ˜Zxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #3
      Hope all goes well Mary x

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        #4
        Matthew is right. It will be fine you can do this.

        that niv seems more trouble than it's worth. Do you have a cough assist machine. Stephen received one of those and an inhaler. He's resisting both but I try to help him ๐Ÿ˜
        when i can think of something profound i will update this.

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          #5
          Mary C Wishing you well for tomorrow. Let us know when you get home x
          Iโ€™m going to do this even if it kills me!

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            #6
            I cannot imagine what you have been goin through. I wish you all the best for tomorrow
            Mum died with MND in 1979 โ€“ My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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              #7
              Hello Mary, I hope that all went well for you today and perhaps by this time its all over

              best wishes

              Sue
              Husband Albert diagnosed PMA Feb 21

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                #8
                Wishing you ll the very best Mary. X

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                  #9
                  Thank you all for kind wishes..I need to drop the nerves and get on with it(Wednesday).Easier said than done xx
                  Mary

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                    #10
                    Best wishes for the procedure Mary, hope the staff treat you well during your stay. xx
                    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    โ€‹

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                      #11
                      I too hope that the procedure tomorrow goes well.

                      Sleep is so important so I hope that the respiratory team come up with a fix for you when you wear the NIV.

                      Love and hugs ๐Ÿค— ๐Ÿค— ๐Ÿค— Lynne xx
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

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                        #12
                        Hi Mary,

                        Hope everything goes well with the procedure brave lady. I've everything crossed for you and hope you're back home soon ready to put your lippy on.

                        Love Debbie x

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                          #13
                          Wishing you well with the procedure tomorrow and hopefully theyโ€™ll sort your problems with Niv xx
                          Janette x

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                            #14
                            Hope it all goes well Mary and you are soon back home xx

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                              #15
                              Wishing you well Mary

                              Richard
                              Richard

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