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Old 30-06-15, 04:07 PM   #1
Amanda Stansfield
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Default Peg feed

Hi all

Twin brother is due to attend hospital tomorrow to be assessed for PEG insertion!
Just been told that should they decide he can have it done he will be awake for the procedure!! can this really be true?? Chris can't sit still even if he wanted to! Plus every time someone has come " ANYWHERE" near him with a needle never mind a scalpel he has fainted and then had a fit!! ...............hmmmmmmmm told the staff that it might be an idea to discuss this issue seeing as though Chris is now going through the stage of kicking out when not getting his own way and screaming at people!!
Has anyone else had any issues re PEG insertion? I'm scared he will have one of his "sulking" sessions and pull it out.....


GIVE ME THE STRENGTH TO CONTINUE TO SMILE EVEN WHEN I WANNA CRY FOR A WEEK!!!!
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Old 30-06-15, 11:14 PM   #2
Melody
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Default Re: Peg feed

Quote:
Originally Posted by Amanda Stansfield View Post
Hi all

Twin brother is due to attend hospital tomorrow to be assessed for PEG insertion!
Just been told that should they decide he can have it done he will be awake for the procedure!! can this really be true?? Chris can't sit still even if he wanted to! Plus every time someone has come " ANYWHERE" near him with a needle never mind a scalpel he has fainted and then had a fit!! ...............hmmmmmmmm told the staff that it might be an idea to discuss this issue seeing as though Chris is now going through the stage of kicking out when not getting his own way and screaming at people!!
Has anyone else had any issues re PEG insertion? I'm scared he will have one of his "sulking" sessions and pull it out.....


GIVE ME THE STRENGTH TO CONTINUE TO SMILE EVEN WHEN I WANNA CRY FOR A WEEK!!!!


Hi Amanda,

I don't have any experience of Peg Feeds with HD, but I used to care for someone who had one. Unfortunately, he didn't have capacity or movement, having suffered 2 major strokes. I would have thought that your brother should have the procedure done under a general anaesthetic, do the team understand HD? I know my patient had his done under a general. - I understand your worry about him pulling it out, has he, or is he able to consent to this? Or has the decision been made for him.. So very difficult and my thoughts are with you. Best wishes x
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Old 01-07-15, 08:32 AM   #3
Amanda Stansfield
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Default Re: Peg feed

Hi All

I spoke to Church Walk and informed them of my thoughts and worries....also told them about his phobia and that staying awake was probably not the best option!! I don't have no rights regarding Chris his wife has them but i wont talk about her on here or i'll never stop!!!!

According to the home Chris has capacity to understand PEG feeding and hes agreed to it but oh i don't dam well know im stuck.....i want him to have the PEG as he is choking a lot more now but then on the other hand i'm scared that he will pull the dam thing out when he has one of his sulking and kicking off moments.........he went for it doing last April but the surgeon refused to do it.......god knows why his wife never told me the reason...
well we shall see what happens today when he has seen the team at the hospital..... until then i have a clinic to run and patients to see and i'm supposed to see them all with a smile on my face!! hmmmmmmmmmmm
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Old 01-07-15, 09:58 AM   #4
shiraz
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Default Re: Peg feed

Hi Amanda

Ah the worries you have and have to hide with a jolly smile, like you haven't a care in the world It's gonna be a long day for you babes, and with this mini-heatwave you'll be frazzled for sure, so I'm glad I'm not at your clinic today!!

I don't have any experience of PEGS. I know I don't like the sound of them and know that Hubs does not ever want to go there. The very thought fills him with horror and dread. But, if he ever gets to that stage, who knows? Until something actually happens to you it's easy to say "I'd never...". I know someone who cares for her Auntie and she has a PEG fitted and every night they give her a bacardi and coke through it - sometimes she wants two!!

It seems a ghastly thing to do whilst awake...though some sort of sedation must be given? Surely Seems barbaric otherwise.
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Old 01-07-15, 11:21 AM   #5
Amanda Stansfield
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Default Re: Peg feed

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Originally Posted by shiraz View Post
Hi Amanda

Ah the worries you have and have to hide with a jolly smile, like you haven't a care in the world It's gonna be a long day for you babes, and with this mini-heatwave you'll be frazzled for sure, so I'm glad I'm not at your clinic today!!

I don't have any experience of PEGS. I know I don't like the sound of them and know that Hubs does not ever want to go there. The very thought fills him with horror and dread. But, if he ever gets to that stage, who knows? Until something actually happens to you it's easy to say "I'd never...". I know someone who cares for her Auntie and she has a PEG fitted and every night they give her a bacardi and coke through it - sometimes she wants two!!

It seems a ghastly thing to do whilst awake...though some sort of sedation must be given? Surely Seems barbaric otherwise.

lol bet our kid would enjoy a Guiness or 2 thats for sure

im hoping they do knock Chris out or they wont be able to do this PEG any other way..... i don't know i feel s**t if i don't and s***t if i do x
i can't decide if the PEG is a good thing or not my head is mashed and i'm still sat here in clinic with a stuck on smile x
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Old 01-07-15, 01:15 PM   #6
shiraz
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Default Re: Peg feed

Hi Amanda

Yeah, the issue of PEGS is rather harrowing. To me it is a way of prolonging someone's suffering, like force feeding them, keeping them alive when there is no hope of actually making them better, and I wonder if it is therefore an intervention that is going too far - it seems cruel. But that's me. My views may well be offensive to others, but I don't mean to offend/outrage - this may well be something I have to face with Hubs. And I find it scary - like you.

If the person concerned feels they have enough quality of life and want to carry on, then I guess we need to support their decision, if it's one they have freely made and not been made for them. See that's why I told you about the lady who likes her nightly tipple - goes straight to her head - she is still having some "fun" and I'm told is comfortable and quite happy. She doesn't have hd but is wheelchair bound with MS. It's all swings and roundabouts isn't it? Very emotional topic
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Old 02-07-15, 08:36 AM   #7
Amanda Stansfield
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Default Re: Peg feed

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Originally Posted by shiraz View Post
Hi Amanda

Yeah, the issue of PEGS is rather harrowing. To me it is a way of prolonging someone's suffering, like force feeding them, keeping them alive when there is no hope of actually making them better, and I wonder if it is therefore an intervention that is going too far - it seems cruel. But that's me. My views may well be offensive to others, but I don't mean to offend/outrage - this may well be something I have to face with Hubs. And I find it scary - like you.

If the person concerned feels they have enough quality of life and want to carry on, then I guess we need to support their decision, if it's one they have freely made and not been made for them. See that's why I told you about the lady who likes her nightly tipple - goes straight to her head - she is still having some "fun" and I'm told is comfortable and quite happy. She doesn't have hd but is wheelchair bound with MS. It's all swings and roundabouts isn't it? Very emotional topic
Oh my god my thoughts are exactly the same as yours!!
On the one hand am i prolonging the inevitable on the other i wanna keep him with me for as long as possible and if the PEG feed will keep his tummy full and stop him from choking then he has to do it ,
Our mum never got to have a PEG my father decided enough was enough as she was very frail and wouldnt have coped with that kind of intervention, but our kid is still full of cheek and mischief, he laughs at rude jokes lol smiles and giggles when you pin him down to fight and tickle just like we did when we were kids. He can still give us a slobbering kiss and grunt i love you......
Anyways the safeguarding team decided it would give Chris the best quality of life for what life he has left.......so just waiting on the date for when he goes in now.
Church Walk took him to the appointment yesterday, they said the surgeon seemed a bit of an ar*e hole but they told him lol lol so did Chris ahahahahaha
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Old 02-07-15, 09:16 AM   #8
shiraz
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Default Re: Peg feed

Hi Amanda

Might have been wise to tell the scalpel wielding plonker after the event - as in, "ow, that hurts" - serves ya right for calling me an 'rsole pal

See...different people, different set of circumstances. Wasn't right for your mum - you accept that, but is for your brother - he wants it, you want...everybody's happy and more hopeful. He sounds great - lovely to hear that you still play fight like brothers and sisters do. There's a lot to be said for being cheeky and full of mischief - a good sense of humour and having a little smile and giggle brightens even the gloomiest of days and gets you through. In fact, good news all round coz I sense a better day for your patients too
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Old 03-07-15, 12:33 AM   #9
Amanda Stansfield
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Default Re: Peg feed

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Originally Posted by shiraz View Post
Hi Amanda

Might have been wise to tell the scalpel wielding plonker after the event - as in, "ow, that hurts" - serves ya right for calling me an 'rsole pal

See...different people, different set of circumstances. Wasn't right for your mum - you accept that, but is for your brother - he wants it, you want...everybody's happy and more hopeful. He sounds great - lovely to hear that you still play fight like brothers and sisters do. There's a lot to be said for being cheeky and full of mischief - a good sense of humour and having a little smile and giggle brightens even the gloomiest of days and gets you through. In fact, good news all round coz I sense a better day for your patients too
You make me smile
It's been a better day today so here's hoping it's gonna be a good few weeks for us all love n hugs coming right at ya x
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Old 03-07-15, 12:56 AM   #10
frankie
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Default Re: Peg feed

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Originally Posted by Amanda Stansfield View Post
You make me smile
It's been a better day today so here's hoping it's gonna be a good few weeks for us all love n hugs coming right at ya x
Hi Amanda , I've popped up again. Sorry Chris has reached this stage . I am sure they have a light general and a small op to have the PEG fitted . I can't believe they would leave them awake. They knocked my brother out just to do an endoscopy as he was very nervous.

My feelings are if they want the PEG they should have it.
There have been many who say at the start they won't ever have it and then change their mind when the time comes.

No easy answers , everyone is different and no one is right or wrong. My GP is for it and knows of patients who have night feeds. Then you hear horror stories about repeated infections.

Take care love. xx
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