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
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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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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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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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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!
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Originally posted by Heather R View PostAm slightly worried that my lungs are up to it
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.
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