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    PEG op

    Going into Hallamshire hospital on Thursday for PEG op on Friday. Glad to have read some of your experiences, helps it feel less foreign, though not looking forward to it. x
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

    #2
    Great you have a date for the procedure, Heather, and I can understand how you're nervous about it all - it's the fear of the unknown, isn't it, as much as what needing the tube in the first place signifies 😩

    Hope everything goes smoothly and it'll be good to have it over and done with.

    Did they say how long you'll be in for?

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

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      #3
      Its good you have a date, Heather. Well done for your bravery... I totally get why you're nervous.

      It will be a relief to get it done. I haven't a feeding tube but I know I should have it before it becomes a complete necessity.

      Hope it all goes well for you Heather,
      Love Debbie x

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        #4
        I don't think anyone could be more nervous than I was. Even when the doctor/surgeon was explaining the procedure to me a few minutes before starting I could feel myself shaking, but as soon as the sedation started I was completely relaxed and didn't feel a thing. Hope it goes well.
        Each day is made easier with a bit of humour.

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          #5
          Thanks all. They said maybe stay in a couple of days after x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            My thoughts go with you Heather xx

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              #7
              Best wishes Heather.
              I don’t have a PEG yet but got appointment with respiratory consultant this week to discuss it.Have to admit it provokes some anxiety in me but hope when procedure is explained and what anaesthesia will be used then anxiety might lessen.
              Mary

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                #8
                Hi Heather
                glad you've got a date. I think waiting to go in is probably worse than having it done.

                we will all be thinking of you and wishing you the best.

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

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                  #9
                  Good news Heather. I hope that it goes well and is easier than you expect, Lynne x
                  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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                    #10
                    Best of everything girl. You rock. 😁x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      Hi Heather

                      Had my feeding tube fitted at the Hallamshire in November 20. They do all feeding tube ops on Fridays. Went in day before. No problem with opp, had sedation didnt feel a thing. Came home on the Monday. They will take you through use of the Peg and I was allowed my daughter to come in for a training session as a backup. Staff were excellent. Had to pester the ward sister several times to get all the paperwork and any meds on the Monday in order to arrange to be picked up for home.
                      Good luck.

                      Kevin

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                        #12
                        Best of luck, be thinking of you x

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                          #13
                          Thanks, and that's useful to hear your experience, Kevin. Am slightly worried that my lungs are up to it, but have to trust they are making a conscious informed decision on this.
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                          Comment


                            #14
                            Heather they will have checked your lungs beforehand.
                            when i can think of something profound i will update this.

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                              #15
                              Originally posted by Heather R View Post
                              Am slightly worried that my lungs are up to it
                              Did anyone mention your breathing in relation to the procedure, Heather?

                              You don't use NIV, do you?



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

                              Comment

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