PEG Life III

[matthew55]

When I first got a PEG it was my intention to only use is for breakfast and drugs. As my mouth dies I use it more and now all my nutrients go in via a syringe. I refuse a pump at least until I can't use my hands. One thing I should point out is that you cannot feel anything you put in but you will taste it when you are lucky enough to burp after! 😊 x

[denise]

morning matthew
do you think using the peg all the time means that the mouth packs in earlier than if you had carried on? or do you think it would have happened like that anyway? explain the pump thing to me. i thought it was just a syringe.
so the food has flavour then? i dont know what to expect when stephen gets his done. do you suppose its the same stuff they give the military to live on? i guess not but it was just a thought!

[matthew55]

Whatever is happening to me happens no matter what I do or don't do. It is what it is. You can wear a backpack and feed is slowly pumped over a number of hours, or like me use a 60mil syringe that screws on. I clean the syringe under the tap after so I use one a day. I get nutrition drinks for PEG use for free so my grocery list just has milk and booze! It comes in various flavours but sadly not meat flavoured. ☹️😉😃x

[denise]

what?! not meat flavoured! i dont believe it. well i never. i am stuck for words. not even fish and chips? so he goes veggie. well there's a turn up for the books. so what kind of flavour! curry?

[matthew55]

Sadly not. Vanilla, Strawberry and Chocolate. MND is a metaphor for being a baby again. 😊x

[denise]

nothing savoury at all. well i'll go to the foot of our stairs!

[denise]

am i right in thinking that the feed that you put into the peg is the body building whey drink? stephen has been taking this as i thought it might stop him losing weight. it comes in the same flavours.

[matthew55]

Mine are called Ensure and are milk based calorie/vitamins drinks. My weight is going down around a pound a week no matter how much I take. I was once 17st with a 28"waist. I now weigh 11st and 26" waist. I'm still 6'1" at least. 😊x

[denise]

I think Stephen is the same as you. It's scary how quickly the weight is going. I'm trying to encourage him to eat and it's having the opposite effect on my weight

[matthew55]

My nurtrisionist is clueless about MND. We loose weight without effort and nothing will change that. It is what it is. x

[Ellie]

am i right in thinking that the feed that you put into the peg is the body building whey drink?

No, the bottles of food/drinks put through a feeding tube are nutritionally balanced and provide all required nutrition if taken as directed by a Dietitian - whey based sports drinks are not complete.

[denise]

Thanks for that. I shall carry on with this until the right moment arrives

[denise]

back in lock down - cant recall when but i had a chat with the doctor on the phone with regard to stephen having a peg. so the date arrived and stephen firmly said no it wasnt going to happen so i had to phone up and cancel. next trip for a hospital appointment we had talked over the peg thing and decided this time to go ahead. an appointment comes through the post and we we set off early morning for the hospital. a horrilbe day standing around outside and then inside and then waiting around. see the doctor only to realise its to talk about the operation not actually have it. then we go off for a ecg and chest x-ray. so at least it wasnt a wasted journey. we are given an appointment 18th september 12 o'clock so we think great and he is to be there for the day which seemed odd going in at 12 but there you go. tuesday we get a letter saying that he has to have a covid test before going into hospital so we have to go on monday so we take it that operation on 18th has been cancelled!? now he has to go into hospital on 20th for 2 days to have the operation. i cant keep up with this. the hospital is a good 2-3 hours away and we have to park and then find where we need to go. we left the house at 6am the other day to be there for 9. then we had to stand around outside before being let in. then not enough chairs because every other one is classed as 'not for sitting on' because of the virus. when you have been up since 5am and travelled and waited around and cant even sit down next to your husband who you have been with forever it all seems a bit much. so we are not looking forward to next week!

[matthew55]

Why must we have Post Codes when it comes to Hospital? Isn't there an MND nurse or at least a neurology department? How about a hospital trust? All these help me when I go in for a stay.

[denise]

I suppose you have support in the UK. Not a lot here