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how far can you get along the evading a PEG

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  • DeeH
    replied
    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.

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  • Lynne K
    replied
    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.

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  • Graham
    replied
    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

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  • matthew55
    replied
    Fifteen years like this? Hell is supposed to be after you die.

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  • Lynne K
    replied
    Graham 15 years is great Graham. Here’s hoping me too xx

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  • Graham
    replied
    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.

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  • Lynne K
    replied
    MMG thanks for all that information. I’m going to have a PEG soon and before I need it. xx

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  • MMG
    replied
    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.

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  • SallyAnnB
    replied
    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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  • Ellie
    replied
    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.

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  • Lynne K
    replied
    Worsleybird I’ll watch for your replies as I’m going to Wythenshaw too in the near future xx

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  • Worsleybird
    replied
    Thanks guys watched the video. Very much with you on this John ''Resisted until April this year because it represented for me another step down a road I didn’t want to travel'', thats definitely me trying to hang onto my independence as much as I can.

    Could someone detail what their experience of being on the ward in Wythenshawe / Salford Royal was like please as I was told it would be an MND ward - Im a bit worried/frightened/vulnerable about patients getting out of beds and wandering around in the night etc. as I will struggle to speak? Would there be a nurses station on the ward and how many beds in the ward please? Is it a mixed sex ward?

    Plus 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?

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  • Deborah
    replied
    Hi, I'm sorry you have to make this difficult decision.

    My mum had bulbar onset. She opted for a Peg. She had lost her voice by then but we found the hospital staff super accommodating. She was in for 2 nights. The first few days home were difficult for her, getting used to the tube. And for the first few months she only used it for fluids.

    But then she started using it for meds and food too. It was a massive relief for her as swallowing had become a trial. And the time we spent with her giving her fluids etc. through the peg were really special. We timed it with our favourite tv programmes or radio shows.

    She never got an infection. It was pretty easy to learn how to use the tube and even friends of my mum's would help. There is amazing support at the end of the phone too with the feeding team.

    Just our experience of pegs...

    Big hug to you, Deborah

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  • John D
    replied
    Diagnosed with bulbar June 2019. Gastro team tried to persuade me to have a PEG from 1st meeting with them. Resisted until April this year because it represented for me another step down a road I didn’t want to travel.

    I was very aware of the issues around best (or more accurately worst) time to think about having a feeding tube fitted. My breathing wasn’t a problem but swallowing was, particularly fluids which I was only managing to sip. I’m glad my SALT finally persuaded me because it enables me to take sufficient water on board to stay properly hydrated. I was in hospital for just 2 nights. I also take Nutricia’s supplements through the tube although I can still eat albeit slowly and messily.

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  • PeterPan
    replied
    December 2020 - I could eat most things carefully, but pretty easily, with a drink handy in case I needed help with swallowing. I could take 2 or 3 pills at a time with no problem.

    A year on I have to be extremely picky about what I eat. I can never drink at the same time as eating because that’s guaranteed to make me choke. I now have to have all my pills crushed as they are impossible to swallow.

    In March I had my PEG fitted while I could still breathe easily lying down. I snore but didn’t keep anyone awake in hospital during the two nights I was there. The other patients in the small bay were much more disruptive than me! I put my headphones on and listened to sweet music.

    I’ve lost more than 10% of my weight now and I have to be so careful about food. I’ve just started supplementing meals with Ensure Compact feed via the PEG. All my medications go via the PEG.

    I’m pleased I made my decision I did. I’m also pleased I made the decision when I did. BUT we all have to make our own minds up. The mytube website was helpful to me too. Worth looking at.
    Last edited by PeterPan; 14 December 2021, 18:21.

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