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Moving from indwelling to suprapubic catheter

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    #16
    Originally posted by Ellie View Post
    Woohoo James πŸ‘πŸ‘ I was wondering how this was progressing.

    Is it being done with a local anaesthetic, epidural or the full general? xx
    Epidural πŸ‘πŸ‘
    Foxes Never Quit πŸ’™

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      #17
      Originally posted by Rosemary6NT View Post
      DeeH does the procedure require patient to lie flat and horizontal? This was a query for the peg procedure
      I would imagine you need to be flat?
      Foxes Never Quit πŸ’™

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        #18
        Originally posted by DeeH View Post
        Lcfcno1fan

        I would recommend, the negativity of doctors is shocking to me still.
        I guess some of them see it as non-essential if you have a Urethra catheter in good working order πŸ€·πŸ»β€β™‚οΈ

        Thanks Dee
        Foxes Never Quit πŸ’™

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          #19
          Originally posted by Rosemary6NT View Post
          DeeH does the procedure require patient to lie flat and horizontal? This was a query for the peg procedure
          Rosemary6NT that's a good question for other folk. I know there is a difference between PEG and RIG procedures.

          I asked on behalf of my husband for ther cateract procedure, this question. He can be semi reclined for that, unsure for other procedures

          Donna

          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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            #20
            Originally posted by Rosemary6NT View Post
            This was a query for the peg procedure
            I don't know if that query was answered for you or not Rosemary but if it wasn't...

            Yes, it is possible to have the PEG procedure in a 'semi-recumbent' position but it's not standard practice, so some people might have to have it done in a different hospital or have a specialist surgeon do it in their own hospital, which may entail a wait.

            I've personally known of two people who had the procedure like that, and used BiPAP with a nasal mask. xx
            ​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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              #21
              Originally posted by Ellie View Post
              I don't know if that query was answered for you or not Rosemary but if it wasn't...

              Yes, it is possible to have the PEG procedure in a 'semi-recumbent' position but it's not standard practice, so some people might have to have it done in a different hospital or have a specialist surgeon do it in their own hospital, which may entail a wait.

              I've personally known of two people who had the procedure like that, and used BiPAP with a nasal mask. xx
              Thanks Ellie, I was lucky that Oxford could do the PEG procedure with me at 45 or so degrees. I’m just wondering if there are the same considerations when having a suprapubic catheter inserted as that is next on my list. I will ask my all-knowing MND specialist nurse.
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #22
                Originally posted by Rosemary6NT View Post
                I’m just wondering if there are the same considerations when having a suprapubic catheter inserted as that is next on my list.
                I don't see why not Rosemary, it won't make a difference to how your bladder drains (unless they want to tilt the table head down 😏) and you should be able to use your BiPAP throughout the procedure.

                As you said, your nurse will clarify it for you. xx
                ​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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                  #23
                  Lcfcno1fan Hope tomorrow's procedure goes smoothly James and that you recover quickly 🀞🀞😘😘
                  ​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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                    #24
                    Originally posted by Ellie View Post
                    Lcfcno1fan Hope tomorrow's procedure goes smoothly James and that you recover quickly 🀞🀞😘😘
                    Awwwww thanks Ellie πŸ₯°πŸ˜˜πŸ₯°πŸ˜˜
                    Foxes Never Quit πŸ’™

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                      #25
                      Lcfcno1fan I echo that...hope all goes well..πŸ™
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                        #26
                        Lcfcno1fan all the best for tomorrow
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          #27
                          Thanks everyone πŸ₯°

                          So I was in for longer than expected as I bled more than normal but otherwise everything is okay πŸ‘
                          Foxes Never Quit πŸ’™

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                            #28
                            Originally posted by Lcfcno1fan View Post
                            So I was in for longer than expected as I bled more than normal but otherwise everything is okay
                            Thanks for the update James πŸ‘πŸ‘

                            Take it easy and recover well πŸ˜˜πŸ€—
                            ​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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                              #29
                              Lcfcno1fan best wishes for a speedy recoveryπŸ™πŸ€—
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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