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how far can you get along the evading a PEG

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    #16
    Originally posted by Worsleybird View Post
    s the mickey PEG seems much more discrete but when I asked about that I was fobbed off and told that wouldnt be classed as a priority as it was more cosmetic than necessary. Can you insist on a Mickey tube PEG rather than the longer tube one I wonder?
    Assuming you mean the low-profile button, they are not put in as an initial feeding tube, only when the stoma tract is fully established are the generally placed. Nor are balloon retained tubes used in a PEG procedure - the MicKey brand make balloon retained long feeding tubes and buttons, as well as bumper/disc retained long feeding tubes.

    If you were to have a feeding tube placed in a RIG procedure, usually a balloon retained long feeding tube is used and this type of tube needs regular replacing. It is on this occasion that the long tube can be easily switched for a button. Perhaps you could enquire about this option.

    Even with a bumper retained long tube, it’s possible to have this changed to a low-profile button, once the tract is well established (6+ weeks) I had my PEG-placed, bumper retained tube swapped to a low-profile button. Not all buttons are balloon retained, some are bumper retained, meaning no regular replacement necessarily needed.
    ​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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      #17
      Worsleybird As I have written before, I was annoyed at being talked into having my RIG procedure (my hospital doesn’t offer the PEG) at a very inconvenient point in my life and distressed about how long the subsequent infection took to clear up. That said, I am now extremely pleased to have it.

      Taking tablets had become very difficult and I can now take my thyroxine and riluzole in liquid form via the tube. In fact I don’t even need to get out of bed and scarcely need to wake up as my husband, who habitually rises a couple of hours before me, comes and whacks the medications in when I am barely conscious in the mornings. I also use the tube for feeding now and it is so quick and easy. I have lost most of my sense of taste and smell and what with the swallowing difficulties, mealtimes have lost their appeal, so the high calorie liquid foods syringed into my tube four times a day take the pressure off and allow me to maintain my weight without too much effort.

      The neurology ward at QMC Nottingham was ghastly, the nursing staff ranging from uninterested in their patients to downright incompetent, but it was only for forty-eight hours. I lost a kilo and had no sleep and you had to be prepared to fend for yourself, so I was glad to get out and come home, but it was an experience!

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        #18
        Hope this helps a bit, my husbands experience was that he was advised to have a PEG before he needs it as it is a less risky procedure if still has good breathing etc.

        He had a 2 night stay at Royal Stoke hospital in an en suite side room in November 2021. Staff were amazing, he wasn't allowed visitors due to COVID, he can't use his hands so staff provided a head operated call bell.

        His breathing is currently OK but he has terrible secretion issues.

        He says that the fear of the hospital stay was worse than the stay.

        The procedure took 7 minutes.....

        I got used to caring for it, flushes and turning etc, squemishness soon went.

        We thought we were months away from needing to use if for nutrition, but we had a crisis last week and are now using it to supplement oral feeding. Its the first day of using a pump today and he has perked up after being quite poorly for a week.

        Don't know whether this is the new normal or a temporary phase, but either way he has said he is glad he had it done when he did otherwise he could have been in trouble now.

        We do tend to heed the "experts" advice.

        Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

        Respiratory and blood gases still within normal range.

        No speech but sense of humour still fully intact.

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          #19
          MMG thanks for all that information. I’m going to have a PEG soon and before I need it. 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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            #20
            I guess the answer is that it depends on if you will need it.

            I have survived 15 years and 10 years not talking. I refused a PEG.
            Copyright Graham

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              #21
              Graham 15 years is great Graham. Here’s hoping me too 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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                #22
                Fifteen years like this? Hell is supposed to be after you die.
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #23
                  Hi Lynne, I would have thought that the consultants would know in this day and age just which of us need a PEG. It does seem like the consultants still don't have a clue.

                  I have figured out over the years that the management of my care has caused me the most 'Hell no Earth'. If carers actually knew what to do in all situations, life could even be pleasant, right to the very end.

                  Must carry on with the app. xx
                  Copyright Graham

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                    #24
                    Graham Thanks for your comments.

                    About carers: I’m worried about my future when carers are involved. Even employing them in the first place fills me with trepidation x
                    Last edited by Lynne K; 19 December 2021, 09:58.
                    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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                      #25
                      Graham

                      Thanks for this input. Husband considers the PEG his line in the sand.

                      Still eating and drinking but with head drop so difficult. Voice also getting soft so looking into eye gaze.

                      As an ex nurse I have no problem caring for it (PEG tube) but must support his health wishes.

                      Just filled in the DNACPR, do not CPR, this week.

                      Everyone's lived experience is so helpful


                      Caring for husband diagnosed MND July 2020.
                      Donna

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

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