PEG feeding

[Mars]

My husband Tony is expecting to have PEG fitted next week due to poor swallowing and aspiration. What are the pros and cons that people have experienced. And I would also like to know how PSP sufferers cope with the loss of another basic pleasure such as eating as for Tony now apart from listening there's not much else.

[dllera]

Hi Mars. My dad had a peg tube and to be honest - we didn't experience any cons. It was a quick and easy surgery. The peg was a Godsend and a choice my dad made because he was hungry. The satisfaction of having food in the stomach was good for him and outweighed the loss of eating- -but we started with supplementing with the tube while still giving him some pleasure of food on the palate - but over the 13months he had the tube before he passed we moved to 100% peg fed - then you have to be aware of making sure that his mouth remains moist - so I guess that would be the only con- we used dry mouth sprays and gels. We started on 5 cans a day but over the course of 13 months -my father's body stopped being able to simuated food (he had PSP for 10 yrs) and we decreased to 4 a day to 3 a day and so on until dad passed. Before my dad had the peg -the doctor gave my dad a year or less - -the peg did extend his life from a nutrition perspective but in no way changed the outcome or the course of the disease and my dad passed 13months after he was given a year or less. The biggest plus for us was giving my dad satisfaction from hunger and medication administration.

I hope this helps - getting a peg or not is an extremely personal decision. Best of luck to you!

Danielle

[Fiona_McL]

Hi Mars,

my mum had the PEG for nearly a year before she died.For the first few months she had more energy and could even speak more clearly, which was a great relief to her. But, of course, it's not a cure.

She was in a nursing home and was fed overnight, and had all her medications via the tube. It's a possible site for infection, so that has to be carefully managed.

Also, she did feel hungry for a while- it takes time to adapt to the stomach never feeling 'full'. She was able to take some yoghurt or cream (a few teaspoons) which still gave her the sensation of taste. She didn't miss the struggle that being fed had become, at all.

Best wishes

Fiona

[mlr82]

Hi, my Dad had the PEG fitted last August, and it has made a huge difference. Last Aug he had a urine infection and went into hospital for 4 weeks, and he lost a lot of weight. He was due to have a PEG fitted a month later anyway, but they brought it forward as he was already in hospital, and also quite thin.

With the PEG my dad but the weight back on, and more. He still eats 3 meals a day as well (small portions), of mashed up food. He's always loved his food, and as long as it's safe for him to do so, and he can manage, we will continue to orally fees him.

For breakfast he eats porridge and fruit, lunch a soup, and for dinner mashed potato with either chicken or fish (cut into small pieces), with gravy. We also administer his medicine in liquid form through the PEG. It's far safer than him trying to swallow pills.

Hope that helps. Marisa.

[Vitruvian]

Dear Mars, Can you post to let us know how he got on? I hope it went well.