Old 05-19-2017, 02:50 PM #1 (permalink)
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Default Who knows best??

My father was diagnosed last month and we had our first visit to the MDA clinic. Here we found out that his lung capacity is sitting at 48%. He is in desperate need of a peg tube which hopefully will be done in the next week. Meanwhile, he is beginning to not eat and sleeps all the time.... I am trying to push things along but he states things will work out in the end the way they are suppose to...
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Old 05-19-2017, 03:13 PM #2 (permalink)
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Default Re: Who knows best??

Sorry to welcome you here, C. Your dad is likely still processing this news, depending on how long the diagnosis process was, and now is facing an interventional procedure in short order. Is this tube being done in radiology?

Give him time to basically wallow in depression/get used to the tube, before you try to converse in depth about how he wants this to go for now, and how you can best support. But since it is a procedure that carries risks, as all do, make sure you at least have a health care power of attorney if not done as yet.

Best,
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Old 05-19-2017, 08:34 PM #3 (permalink)
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Default Re: Who knows best??

Regardless of who may know best, the patient has the legal and final say. Of course, he needs to be mentally competent for that. Common sense says that the patient needs to be well informed about the pros and cons of any procedure or equipment considered before he can "know best". In the real world, that info can be hard to deliver to someone who refuses to listen! In that case, remember that the patient's decisions are not written in stone. As time goes by and new problems come up, ALS patients often are willing to learn about and consider options. Advance Directives can be changed by the patient as long as he can communicate at all, even if only by blinks or tiny movements. It is so hard for family members to accept doing nothing more, but don't we all want to die on our own terms? That can be the best gift we can give someone with ALS.
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Old 05-19-2017, 09:14 PM #4 (permalink)
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Default Re: Who knows best??

He has agreed to the tube knowing full well what that means. The 48% worries me.. what exactly does this mean... can he regain some function? They weren't very clear.
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Old 05-19-2017, 11:56 PM #5 (permalink)
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Default Re: Who knows best??

Do a search for threads about FVC (the 48%). You will see while it usually goes only one direction, it doesn't predict "the end" with any certainty, and there can well be years of life past that number. However, after the tube, he needs a BiPAP if he wants to be around for a while.

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Old 05-20-2017, 12:21 AM #6 (permalink)
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Default Re: Who knows best??

If I had a terminal disease, I would hope the people around me would let me do what I want. I'm an adult. Even if they disagree, if they are certain that I'm doing the wrong thing, then they need to smile and support me no matter what. It's my life, and I'm in charge.
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