Feeding tube question

[PSPPsP]

Hi,

I haven’t posted in a while but my

partner has PSP and recently started using a feeding tube supplemented with

protein shakes. This has made a big

improvement in his quality of life

and health...has now actually gained some weight.

But the long term care home where

he lives won’t replace the insert in his stomach if something goes wrong. They

insist they have to send him to

emergency which is very stressful for everyone.

We are in Toronto, Ont. I wondered what other people’s experiences have been

in this situation. The care home was at

first very negative about the tube option

but has slowly come around except for

when problems come up.

I am wondering if nurses are generally qualified to replace the inserted part etc.

Thanks a lot.

Linda in Toronto

[NannaB]

Hopefully nothing will go wrong. If it has to be replaced it will have to be done in a hospital as they cant do it from outside. A new one would have to be inserted like the first one was. My husband only had one and he was only away from me in the hospital for 30 minutes. It was very quick using local anaesthetic and something to calm him down. I fed my husband through the PEG for 10 months with no problems until he decided he wanted to go and indicated he didn’t want to be fed any more.

Try not to worry about something that probably won’t happen.

Best wishes.

XxxX

[kenh1]

There are a number of posts already on this site, nearly all fears negative, actual experiences of tube feeding nearly all positive including our own after over two years on an ng tube.

[Javan]

Two and a half years with the peg and we have not had one problem. It has been a blessing in keeping my wife in good condition. It was a worry at first but that soon stops .

[Karynleitner]

I am thankful for your post and the many responses. My husband is still able to eat OK, ut a doctor recently suggested that she believed PEG tubes worked with PSP as they do Alzheimer’s and add less then 50 days to their life, and not a good 50 days. Clearly, with PSP, she is wrong.

My brother has had a Peg due to tongue cancer. He had it replaced twice in 4 years. Rey easy procedure.

[Sayer]

Replacement is not a task that a care home can perform. PEG tubes have to be changed by hospital trained staff. In the UK PEGs are changed every 1.5 - 2 years but it depends on the type of PEG being used. My wife had one without trouble for many a year..

[raincitygirl in reply to Sayer]

Sayer, you have been here a long, long time... If I may ask, Is your wife still at home, and how is she doing? I was reading your last post 6 months ago about aspirational pneumonia...

Thinking about you tonight. XX

Anne G.