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    #16
    No-one mentioned it as yet, Ellie. My respiratory physio hasn't given me another appointment and is now apparently on leave. After I asked for figures, she sent me these

    "Below are the results:

    19th October 2020: pH: 7.462 p CO2: 4.68 , pO2: 8.7, HCO3: 25.1, spo2: 94%





    25th Jan 2021: pH: 7.458, pCO2:4.70, pO2: 9.1, HCO3:25.0, Spo2: 94%.





    22nd March 2021: pH: 7.48 p CO2: 4.72 , pO2: 10.8, HCO3: 26.5, spo2: 97%



    So all of the numbers are normal but your HCO3 (the bicarbonate level that slowly increases when your waste gas is raised and as mentioned 27 would be when we would need to consider a breathing machine so you are getting quite close to that now."

    My OT has spoken to another respiratory physio but not heard back from them yet. x

    Diagnosed July 2020, ALS bulbar onset.

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      #17
      I wouldn't be worried about the procedure, Heather - you've obviously no problem breathing whilst laying flat and have decent diaphragm function.

      I wonder if your October and January tests were done at a very different time of day to your March tests, maybe early morning or shortly after eating - they are different enough to make me wonder, that's all, nothing freaky!

      Thanks x
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #18
        Thanks, Ellie , that's re-assuring. I've been fixated on the fact my respiratory physio said I wouldn't be able to have the ordinary PEG if my bicarbonate level was 27, and the difference between January and March would suggest I might have got there by now. They were both done at 2pm. Can you tell from those results that I have good diaphragm function? I feel I don't understand the results enough, but my retired GP brother thinks I shouldn't worry as well, so I shall not (hopefully!) x
        Diagnosed July 2020, ALS bulbar onset.

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          #19
          No, those blood gas results don't tell much about your lung function, Heather. If you have no breathing issues, the PEG procedure shouldn't pose a problem. They'll check you out when you arrive in the hospital for peace of mind, I'm sure.

          Best wishes for Thursday and Friday. x
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #20
            Best wishes for tomorrow Heather x

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              #21
              Best wishes from me too Heather

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                #22
                Hope it goes well tomorrow Heather.
                Best wishes
                Mary

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                  #23
                  Got everything crossed for you for tomorrow, Heather.
                  Hope everything goes well.
                  Love Debbie x

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                    #24
                    Hope that you have a trouble free procedure xx
                    much love Sarah xx

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                      #25
                      Will be thinking of you

                      Love and hugs 😘
                      when i can think of something profound i will update this.

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                        #26
                        Thanks everyone xx
                        Diagnosed July 2020, ALS bulbar onset.

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                          #27
                          Hope you're done and dusted by now Heather R and the procedure went without a hitch.

                          Make sure you get pain meds to keep you pain free, these first few days especially.

                          A gentle hug to you, Heather 🤗

                          Love Ellie.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #28
                            Hi
                            I think I will be having a PEG soon and have to say lead nurse who saw me yesterday did a great job of explaining the whole procedure.She is part of the bigger palliative team I am known to.All questions answered in the depth I needed.Seeing nutrition and dietetics clinic next week as I am losing weight.After years of loving food and meals out I now have a poor appetite as never feel hungry.
                            I would like to say members on here( particularly Ellie) have also shared their experiences of having PEG fitted and again that’s reassured me.
                            Thanks to you all
                            Mary

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                              #29
                              I'm hoping it went well though I'm pretty sure it did. Hope you are home soon if not already.

                              love and hugs Denise xxx ♥️
                              when i can think of something profound i will update this.

                              Comment


                                #30
                                That Nurse sure is worth her weight in gold Mary! I am glad she was able to answer all of your questions and provide reassurance to you.

                                Love Ellie x
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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