This morning my husband had an appointment with a doctor from the gastroenterology department at our local hospital. Staff from the Hospice said in September that he should have a PEG fitted as he chokes sometimes when drinking and when eating at the day centre ( he rarely chokes when eating at home). I said I didn't want him referred at that time as we were having weeks away in September and October and I didn't want him to have long journeys after an op. They said he should have it before he needs it as he could still eat normally but it would be in place when needed so I agreed he could be referred after our October holiday.
Today the specialist asked me why I wanted my husband to have the PEG. I told him what the staff of the hospice said. He said he wouldn't do it now as it isn't necessary. He said 30% of those having the operation die within a month and he wasn't prepared to take the risk with someone who was well nourished. I said what about preventing aspirational pneumonia and he said as soon as my husband needs the op, he will arrange it. He has arranged a swallow X-ray for January and is going to contact the nutritionalist. I asked about the theory that it was better to do it as a precaution and he said my husband may never need a PEG so why put him through an operation with the risk of complications and infection after unless it is needed.
No doubt others may think differently and thousands of people have had PEGs fitted with great success but personally I am quite relieved as Colin originally had thumbs down when the hospice spoke about it but was persuaded it was a good thing to have now. When he was able to talk and write, he completed a form saying he wanted a PEG when necessary and as soon as it is, he will have the op.
Nanna B
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NannaB
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NannaB we are at the stage where they are all bringing the subject up about the peg. At the moment he can eat a soft diet he has a lot of fortified drinks and suplaments. He does choke a lot and is now only weighs 57kg (8st 13). And he has had 3 lots of asperation pneumonia since September. And his chest still rattles now.
It is a difficult decision isn't it. I don't know what my husband weighs but it was 15 stone last time he was able to stand on scales and he hasn't lost very much. He still manages to eat normal food but liquidised or mashed and doesn't need supplements. He hasn't had any chest infections so far. I suppose we can only take the professionals advice and make a decision based on what they say.
The PEG is a difficult decision, only you and Colin can make it. Hubby did not want a PEG, however, after loosing a lt of weight, down to 42 kg at 5ft 10, he decided to have one fitted. It worked well as a nutrition top-up, he was still eating normal food. His swallow x-Ray showed that a lot of food went down the wrong way and he was unable to cough it up, so we changed to puréed food. Swollowing became a problem, he ate less and less. He had the PEG for nearly 11 months before he died. There were no problems and no infections. It's a difficult decission.
Hi Maddy, it's reassuring to know there were no infections or other problems. We were prepared to have the op done when we went yesterday but looking at my nearly 15stone husband, the specialist said he was obviously not malnourished. It will be interesting to see the swallow X-ray. He rarely chokes when eating but does with his first drink in the morning.
My husband had a PEG fitted when eating enough to maintain his weight and health became a struggle. The procedure was very straightforward , he was at the hospital for about two hours in total, he had no problems in adjusting to it . He was still able to eat small amounts for pleasure ,so could enjoy bits and pieces of what he liked. I was worried that if was not well nourished the limited mobility which he had and which allowed to continue to lead some semblance of a normal life would be put at risk. We had very good support from the dietician who checked up on him regularly.
He died very recently , I think that without the PEG the last few months of his life would have been even more difficult for him than they were.
I'm sorry you lost your husband to this horrible disease. I know the PEG can make a huge difference when it becomes necessary and It's good that it helped your husband until the end. I know a young woman who has had a PEG for most of the 40 years of her life. Severely disabled at birth it has kept her alive to lead as good a quality of life as is possible. As soon as my husband shows signs of being unable to eat enough to keep his body healthy the surgeon said he would be prepared to operate.
It's good your husband was only in hospital for 2 hours. I was told it could be up to 72 hours so hope, if the time comes for my husband to have the op, it is as quick as your husband.
After Botox injections for drooling, choking on liquids seems to be mostly alleviated. Now it is back and also time for injections. Not sure if it's related, but seems so. However, we have top docs in Arizona and Iowa and can't get in for ten weeks. Frustrating!
Hi nana
My mum was chocking and coughing for a couple of months and we could hardly understand her but one day we walked in and she was talking and still on puréed food but managing so here's hoping for you, she had chocolate and tea today along with her fav songs, a good day x x
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