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Old 11-06-2009, 04:32 PM   #1 (permalink)
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Default 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?
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Old 11-06-2009, 04:51 PM   #2 (permalink)
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Default Re: What would you do?

Hi there. Tough decision. Myself I think I'd take the surgery. He may be able to come off the vent. If he can't then he deals with it then. The alternative would be to do nothing. Has the doc given him a timeline as to how long he might live without surgery? From what you are saying he'll be forced to use a Bipap soon and may need it 24/7. A vent may be a better idea in the long run. I wish I could give you a better answer. You can call me if you want to talk.

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Old 11-06-2009, 05:08 PM   #3 (permalink)
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Default Re: What would you do?

If he has already been diagnosed with ALS and is having breathing problems then the chance of coming off the vent after surgery is very unlikely. But with a vent he can still be very mobile, no reason to fear it. If you want to talk let me know and I will call you. As you might already know I have been there.
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Old 11-06-2009, 10:03 PM   #4 (permalink)
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Default Re: What would you do?

Thanks both of you. I will call if I need. On behalf of my friend or just me needing to. We,my hubby and I are getting to that point of Serious discussion. This disease is brutal !! Bloody hell. !
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