PEG tube for respiratory onset

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Samkl

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Joined
Nov 1, 2019
Messages
143
Reason
Lost a loved one
Diagnosis
08/2019
Country
AU
State
NS
City
Wollongong
Would anyone not recommend a PEG for a respiratory onset PALS? My brother was first diagnosed in August 2019, and seems to be progressing reasonably slowly from what j can gather. No one, neither his doctor nor his partner, has encouraged him to get a tube, even though weight loss and eating are a problem, and have been for quite a while. I quote from here frequently the benefits of a PEG, but I wondered if the respiratory onset, rather than any other sort might be the issue.
 
If his breathing is very bad there might be concerns about the procedure although people with pretty low numbers have had rig procedures while using bipap and come through ok.

I can’t think of another reason. Weight is a huge issue as you know. Respiratory compromise can really up the caloric needs too as breathing uses so much energy. If your brother wants a tube he should ask asap. It would save energy as well as providing a safe route if his swallow is bad. Do you know for sure he hasn’t been offered
 
No, it hasn’t been offered. He believes there’s a sense of “what’s the point” because he is respiratory onset, and that’s the start of the end point in ALS. He’s 12 months in to a 2 year prognosis. He uses His BIPAP overnight, and Sometimes during the day for a rest. I’ve said for months and months he should get a feeding tube, but it hasn’t been raised by anybody in his team. He is a throat cancer survivor, and since his RX treatment eating and swallowing has always been mildly an issue. He did have a feeding tube years ago when he was having radiation for the throat cancer. Eating and trying to keep any weight on has been a real source of stress for at least 8 months, perhaps in part because of anxiety.
 
I'm with Nikki. A prognosis is a prediction, not a certainty. Even a year is a long time and of course nutrition is part of that prognosis. A feeding tube could make it much more worth living. If you were saying he wants to end his life now, of course, I would say, that is his wish, but if he is playing it out for now, our statement stands. I would present him with that fork in the road and see what his response is.

Best,
Laurie
 
IMO, a feeding tube will increase his quality of life and make his ultimate transition more comfortable and manageable.
 
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