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K-Town · 11-06-2009, 03:32 PM

Ok quickly. A friend. 40 something. Dx with ALS feb 09, but symptoms long b4 dx. He is needing 6 hours of help a day from nursing and such. He breath stacks and he has had episodes of blue lips and 911 calls. He cannot get through a sentance without gasping. He does not use a bipap, even though advised. He eats fine. Walks with a walker but is progressing beyond a walker.

Here's the deal. A cancer doctor has noted that he may have cancer in his mouth. I repeat, may have. They want to do surgery next week! He will be under general anesthetic. They told him he may have to be vented, trached. But that he may be able to come off the vent eventually.

My friend doesn't want to be vented, he says. He has expressed his love of stil being able to walk. He believes he will still be walking around and independant after this surgery. He has been led to believe that even though his lungs might not function after during or after surgery, therefore requiring vent, that his lungs will get better. I don't know if he is being led down the right path here. No medical advisor on his team is an ALS specialist. ( he kinda burned that bridge...) my friend is confused, and writes that he is not sure what to do.
what would you do?

11-06-2009, 03:32 PM	#1 (permalink)
K-Town New Member (Say Hi) Registered Member Join Date: 2008 City: K-Town State: ontario Country: CA Diagnosed: 06/2008 Posts: 42	What would you do? Ok quickly. A friend. 40 something. Dx with ALS feb 09, but symptoms long b4 dx. He is needing 6 hours of help a day from nursing and such. He breath stacks and he has had episodes of blue lips and 911 calls. He cannot get through a sentance without gasping. He does not use a bipap, even though advised. He eats fine. Walks with a walker but is progressing beyond a walker. Here's the deal. A cancer doctor has noted that he may have cancer in his mouth. I repeat, may have. They want to do surgery next week! He will be under general anesthetic. They told him he may have to be vented, trached. But that he may be able to come off the vent eventually. My friend doesn't want to be vented, he says. He has expressed his love of stil being able to walk. He believes he will still be walking around and independant after this surgery. He has been led to believe that even though his lungs might not function after during or after surgery, therefore requiring vent, that his lungs will get better. I don't know if he is being led down the right path here. No medical advisor on his team is an ALS specialist. ( he kinda burned that bridge...) my friend is confused, and writes that he is not sure what to do. what would you do?