Last night when I was trying to get medication and water down my PEG tube, it all poured out on me, seems to have a leak or damaged. I tried using both endings and was sure I had screwed the tube on properly. Has anyone else had that experience? District nurse trying to locate a PEG nurse
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Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
Hi heather, itβs probably coming from further down where the connector thins out, it happens to mine quite often I always have spare to change them over your peg nurse will probably show you how to do this. Hope this helps Janette xJanette x -
Thanks so much Janette, my dietician has come out and put another end on, she says they are not well made, and she has given me a spare. xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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I'll be more relaxed about it happening now!Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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I keep spares of the end bit. It's really easy to do yourself ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Aww glad youβve got sorted π Janette xOriginally posted by Heather R View PostJanette xComment
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AgreedOriginally posted by matthew55 View PostDiagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.Comment
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We're having problems. UK fit different to Portugal fit. I'm having to use pliers to get things apart. Nightmare. π©when i can think of something profound i will update this.Comment
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