My friend is probably dying

[SamIam]

Originally Posted by Clodfobble

I'm pretty sure HIPAA makes it completely illegal, in fact. But realistically, your friend is going to hear bad news from the doctor either way, and he will probably appreciate having someone there to ask questions that he surely wants to know the answer to but may not be clear-headed enough to think about yet.

You're right about HIPAA, Clod. I hadn't thought about that. The thing is, unless some member of his family steps in, I'm his main source of emotional support, at the moment. I also go over and cook and clean for him when he's too sick to do for himself.

So, I'd like to know what kind of a ride I'm in for. My friend is experiencing alot of confusion and memory problems right now which makes it hard for him to ask the doctor questions himself.

I think this confusion may be due to a condition called encephalopathy in the med articles. Apparently the brain becomes damaged by the high amount of toxins in the blood of someone with severe liver disease. The condition only worsens from what I can tell from my reading.

My friend is really going to need someone to be his advocate. He seems to think his family won't be very helpful and told me that he wants me to be the one there when he undergoes all the testing, so I hope HIPPA won't prevent the doctor from at least talking to us together. And, yes, B. Serpent, I think he is beginning to go thru the stages Kubler-Ross described.

Thank you, everyone for giving me a sounding board. This is very hard.

[Pie]

I don't think HIPAA will prevent you from having his medical power of attorney -- if it's what your friend wants, and he is able to sign such paperwork "in sound mind".

Sam, I'm sorry for your situation. It's amazingly good of you to come through for your friend; I hope he knows how lucky he is to have a friend like you.

[Cicero]

Originally Posted by SamIam

I think this confusion may be due to a condition called encephalopathy in the med articles. Apparently the brain becomes damaged by the high amount of toxins in the blood of someone with severe liver disease. The condition only worsens from what I can tell from my reading.

Or maybe it's hard to think after someone says you have a terminal illness and you aren't going to make it. Instant confusion. You don't even have to add water.

And while you are seeing the doctors the confusion and stress increases and they start jabbing you with things etc. etc...and you leave the office and you are sure, the old up is the new down or something. It helps to have someone there with their head on at least halfway if not straight- is my only point. I did this for my husband because he gets stressed out, confused, and can't remember everything that was said or what happened, or could even remember what questions he wanted to ask, and ask them.

They never asked me if we were related by the way. They assumed.

[Cicero]

Originally Posted by SamIam

I think this confusion may be due to a condition called encephalopathy in the med articles. Apparently the brain becomes damaged by the high amount of toxins in the blood of someone with severe liver disease. The condition only worsens from what I can tell from my reading.

It's the Holy Shit Syndrome: Where all you can think is Holy Shit.
Or maybe it's hard to think after someone says you have a terminal illness and you aren't going to make it. Instant confusion. You don't even have to add water.....

And while you are seeing the doctors the confusion and stress increases and they start jabbing you with things etc. etc...and you leave the office and you are sure, the old up is the new down or something. It helps to have someone there with their head on at least halfway if not straight- is my only point. I did this for my husband because he gets stressed out, confused, and can't remember everything that was said or what happened, or could even remember what questions he wanted to ask, and ask them. (sometimes he'll even remember asking the question and not know the answer)

They never asked me if we were related by the way. They assumed.


Don't ask HIPAA for their opinion. It's apropriate always to help your friends in the best way you know how. If that means being their spokesperson for a minute because of the huge wave of crap landing on them...do it. It's not a sneaky thing you are doing...... If you are in the examination room with him you are obviously close enough to him to ask the important questions when he cannot. They don't expect their patients under extreme duress to manage every little detail by themselves I'm sure. It is expected that the terminally ill is accompanied by the closest at hand. (well, in a sane world)

Don't sweat that teeeny tiny stuff. If your friend needs answers, well, get them. You don't have to pull a doctor aside, your friend needs to know his own condition and has a right to have it explained in the terms, and when he can understand it.


Oh yea....and good luck...lemme know if you need anything!!!

[xoxoxoBruce]

I'd take a written list of questions to the next appointment. It's easy to loose track when the answers are a little unnerving.

Yup, it happens often

[TheMercenary]

Originally Posted by Clodfobble

I'm pretty sure HIPAA makes it completely illegal, in fact.

HIPAA will in fact allow it. But the release of info needs to be in writing to his health care provider.

http://www.hhs.gov/ocr/hipaa/

[SamIam]

Originally Posted by xoxoxoBruce

I'd take a written list of questions to the next appointment. It's easy to loose track when the answers are a little unnerving.

Thank you for the reminder, Bruce. I was thinking of doing this and then forgot. I'll start jotting down my questions this afternoon. Thanks to Cicero and everyone else for their input. I agree that the mind might go blank after hearing a statement like, "You have almost no liver function left. I'm amazed the lab reports came back as well they did." (The lab reports were apparently awful).

Sooner or later, my friend is going to have to draw his family in. I hope for his sake it will be sooner. He needs to have more support than just what I can offer. I feel very inadequate to this task. Everyone's comments have helped alot, though.

I'll keep you all posted.

[scboxer]

I know this sounds simplistic and I don't know how far advanced is too far for it to work.
Extract of Milk Thistle tablets actually help liver tissue regenerate. It's been around for thousands of years and it works. My doctor was skeptical at first when I started taking it,(she still is,but had to admit something was helping).
It made the difference in having to start Interferon and not having to (yet).
It may be too far advanced in your friend's case...but it certainly can't hurt to try it and it may help ease the symptoms a little. I don't really believe that much in herbs and stuff, but this did make a difference.
My heart goes out to you and your friend.

[Brett's Honey]

Extract of Milk Thistle is supposed to be really great for helping to repair the liver. It certainly wouldn't hurt at any stage.

[SamIam]

Yeah, I went down and bought him milk thistle extract right away. It does seem to be helping some. Could be the placebo effect, or maybe the stuff actually helps. At this point even the placebo effect is worth something. I think stuff like optimism and hope can work wonders - the mind-body connect, you know?

[orthodoc]

Sam, I just got back to the board and picked up this thread ... HIPAA is legislation designed to protect patient privacy, and as Merc said, you can ask questions and act as your friend's advocate if he signs a form giving the doctor permission to talk to you about his situation. If he is able to sign (able to understand what he's signing and its implications - even if he is sometimes confused or having memory problems), he should also consider a health care power of attorney - whether in favor of you or someone else.

If his family doesn't yet know, perhaps you might suggest that he talk to them ... you're right, they should at least know and hopefully become involved. I hope you'll get some support, yourself.

It sounds like you've done some good research. And I agree, the mind-body connection is important.