PDA

View Full Version : swallowing



Chrissy
14th January 2013, 12:26
Hi All

Oh gosh, Bob is ready for the PEG that he refused in October, hope he is well enough for it.
He had a cup of Oxo and when he thought he had swallowed it he opened his mouth to speak and it all just fell out.
Poor soul is not having a good time at all.

Chrissy

Terry
14th January 2013, 13:11
Hi Chrissy;
It sounds that it might be time. I often have trouble with saliva or drink if I don't think and then just try to talk. It is quite hard for us to do two things at once, everything requires so much concentration and thought. There is a operation similar to a peg, that they can do if he is not so well. Hope Bob gets a bit better and that you are copping.
Love Terry

Chrissy
14th January 2013, 13:39
Hi Terry

Thank you, I hope there is something similar that is suitable, he was told in October to have the PEG done before he needs it and now if it has to be general anaesthetic or he has to lie flat as I believe he will not be able to have it.
I need to find out who to speak to about it and get on to it fairly quickly, it's been 3 days now since he ate.

Chrissy

Terry
14th January 2013, 14:04
Oh dear; Yes there is something they can do from the outside and might only need a local. I am sure that other people know more. I was told about over two years ago to have it fitted but I still don't need it. The Mnda information sheets or Mnda connect can tell you more. I think that they could feed Bob through a tube for a short while. You will have to ring around and try to get things lined up quickly.
Good luck, Terry

john
14th January 2013, 14:22
Hi Chrissy,
Irene had peg fitted with a fairly simple operation which seemed to be over in no time. Local anaesthetic sprayed on throat, tube with light inserted(fibre optic) ,quick incision on tummy, tube pulled through. Done.
No fuss, no distress. Stayed in hospital for a couple of feeds showed me how to do it and away we went.
The sooner the better certainly restored Irene to her normal weight.

John

Blackcat
14th January 2013, 14:55
Hi Chrissy, Ditto what John says above. Our experience was the same. Hope this helps.

Chrissy
14th January 2013, 14:58
Hi All

Thank you all so much, I was quite panicky about it, will get on to it straight away

Chrissy

Terry
14th January 2013, 15:06
Hi Chrissy;
I don’t think that it is easy to get to the information sheets so this might help.
Finding the information sheet on Peg etc.
Go on the link to the main web site. Look at the dark blue strip just below the top and click on “Life with Mnd”, then look on left hand side and click on “Look under publications”, then in middle coloured red, “Publications for people affected by MND”. Scroll down and near the bottom you will find
Information sheet 11, PEG and alternative feeding -making the decision
Regards Terry

wooz
14th January 2013, 15:37
I have a RIG fitted which does the same job, however only had a local. Needs to be changed every six months but its very easy to change, done at home!

computatec
14th January 2013, 16:27
Bob may have left it too late, like me, for a PEG. If his breathing is weakening and his swallow too then he could have a RIG which is fitted from outside, using X Ray guidance. I have this tube, arranged by the MND care clinic at Addenbrookes in Cambridge.

john
14th January 2013, 17:11
Hi Clive,
Good to see you posting. Hope you are keeping well.

john

Chrissy
14th January 2013, 17:38
Hi computatec

I think you are right, we just talked to our community matron who is going to get in touch with our MND specialist, she thinks a PEG might be a problem apparently he would have to lie flat for 1/2 hour (he couldn't do that and breathe at the same time)
Stubborn old B, he should have had it when offered, everything he has said no to has ended up being an absolute lifeline...let's hope they can do this quickly, he has declared himself nil by mouth


Chrissy

Rory
14th January 2013, 19:35
Hi Chrissy
I had the RIG version fitted under local as my breathing was a problem and I used the ventilator throughout the op.
Whilst a little uncomfortable lying flat for me ,the operation was simple - I had to ask for more aneasthetic as I could feel some pain .
It is the best thing that has happened to help me, along with the ventilator. The feed comes via simple prescription , monthly delivery and saves on Irene's supermarket bill - but I see none of that !
Hope it goes well
Rory
X

miranda
14th January 2013, 20:17
Good to see you here again Clive.

bakeit Forum