Been a little while since I posted on here and that’s because I’ve been busy living each day while I can.
I am 75 years old and was diagnosed with this life changing burden approx 10 years ago. I am a determined lady who chose to live with MSA rather than give in to it.
I live alone 200 miles from my only chid.
It was put to me yesterday by the hospice doctor, that it was time to consider PEG feeding.
I would like to hear the pros and cons ie is it worth it, how much will it prolong my life. And how restricting is it to living a full life. Life is already hampered by the fact I am permanently in an electric wheelchair.
Any opinions are welcome, I have lived my life and want to continue living it. If I can’t enjoy being me I’d rather not just hang on. Thanks everyone. And a huge huge thank you to all you carers out there, a vital part to making our lives easier. We may not say it enough but without the carers giving up their future we the club members wouldn’t have one.
God bless
Written by
Madauntie
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Hello Madauntie, We are currently in a position where a PEG would have been advantagous, as Pneumonia has resulted in G not being able to eat or drink apart from a tiny bit, and by no means enough. Other forms of temporary tube feeding to sustain him are not viable, but he is now too poorly to have the PEG. As G was well and not having any infections it was not on the top of the list. Hindsight and all that!! I`m sure you will have loads of helpful replies. Good luck.
I have just had the PEG procedure carried out 7 days ago. I don’t need it for feed or medicine yet, but it is there for when I do.
My advice is to make sure you research the PEG pros and cons very carefully. Talk to your GP, nurse, Gastroenterologist consultant about any concerns you may have. There is no such thing as a silly question, even if you may think it is.
It is a very big decision to make, so ensure you are completely satisfied with how the procedure is carried out and any aftercare requirements.
You are the only one who can make the decision, but the medical people will offer any advice you need.
Hello Mad-auntie (Just love that name), My wife's neurologist raised the subject of PEG more than a year ago. He said the time to have the procedure is when you do not need it but when you do need it it will be too late to do the operation due to the patient's infirmity.
The only person we have known who had a PEG it was too late and did not make any difference to his demise.
I can only suggest you talk it over with as many people as you can.
Hi my husband, Phil has the PEG. It was fitted when he was still able to feed normally. He gradually had to start having thickener level 2 in his drinks and has had quite a few chest infections/pneumonia due to aspiration so has been advised to stop eating. Thankfully we have the PEG which allows him to receive nutrients that way. You can still go out with your feed on( bottle can be placed in appropriate bag) or alternatively you can plan feeds around what you want to do. Can even be given overnight.. If you are well enough to have it fitted then please do. You dont have to use it until absolutely necessary. Sending best wishes, Shirley
My Sue had her PEG fitted over 5 years ago and whilst it was a big concern at the time as you feel you are loosing out on a basic function of eating its the best things Sue agreed to have done.
It doesnt stop you eating but it does aid when you just dont want to or cant eat ( or drink) so that you get the minimum dietry and nutrician needs which of course is what you need to stay healthy and fight the condition.
It helps with Food, liquids and tablets and is unobtrusive, just keep it clean.
Sue feeds overnight which we found is best for her and has light nibbles i the day to keep her going.
my hubby had one put in place just before Christmas. It has been life changing for him for the good. When he’s struggling to swallow the pressure is off and we can keep him hydrated and fed through the peg. He is fully hydrated and has more energy and we have had no problems with it.
As his wife I was petrified but it’s nothing at all, a small tube in the tummy under the ribs. It also doesn’t trouble him either x
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