My friend is probably dying
 

I got terrible news from a good friend today. He is suffering from hepatitis C, and, unfortunately chose to do a lot of Hemingway style drinking on top of that. He's off the booze now, but his doctor informed him that he has almost no liver function left. They're going to do a biopsy on his liver next week, but it already sounds very, very bad. His doctor is talking about how to handle pain management, and telling him not to worry about a shoulder replacement surgery he was scheduled for, because, frankly, he may not be around for it.

I don't know how to talk to him about this. I think he's still in shock about the news. One minute he's talking about writing up his will, and the next he's talking about moving to a new apartment, as if nothing is wrong. I've tried to be upbeat as possible, telling him if he just stays off the booze and follows his doctor's treatments, he'll beat it.

Does anyone know of what foods or herbs or other treatments might be helpful? I know nothing about end stage liver disease, but I understand that it can be a miserable way to go.

Any thoughts out there? I am just SO upset right now.:(

Shit Sam, that's horrible. I'm so sorry. I don't know anything about liver disease so I can't offer helpful advice, but I hope you can find some useful information.

I'm really sorry for you Sam...and your friend. I can't help you much other than to let you know that I along with anyone else on the Cellar will be here as a sounding board whenever you need it. Maybe someone else can give you more advice. There are some pretty cluey people around here.

I'm guessing a transplant is out of the question?

Sorry about your friend, but actually no it's not true. If you beat your liver down it will function up till there is only about 20% left. Only then do you become symptomatic. Funny thing that liver, you can get by for so long. But once you become symptomatic things usually go down hill pretty quick. They have transplants but it sounds like he is past that point. Hope is a good thing. Don't lose hope. Stay realistic. Good luck. I'm really sorry.

Very sorry to hear this, SamIam. Transplantation is the only option once liver disease reaches end-stage. I hope that will be a possibility for your friend.

Thanks for the input, everybody. The doctor did not mention to my friend that he should get on the transplant list which seems a rather ominous omission to me. I know those lists can be a couple of years long - maybe more.

My friend has been getting pretty sick, often can't hold down food, is in constant pain from the area of his liver, etc. The Doc gave him a bunch of pain pills which seem to help a little. I've been reluctant to do the research on the Net for fear of what I will find out. I'm sort of in denial right now that there is a very high probability I am going to have to watch my friend die.

This really, really sucks. My thanks to all who replied. It helps to get it all out - even to a group of strangers on the Net.

Mercenary, where did you get your info on the liver?

Anecdote::D
Yeah. I just got a 3rd opinion on my husband's "Lymphoma". He does not have Lymphoma. It does not hurt to get other opinions. I just visited that hell for a couple weeks. Make damned sure. I went to "specialists" and they seemed pretty unenthused about his condition. I took him to another city through the ER yesterday,(everyone thought I had just lost it) and guess what, Not Lymphoma, Not Cancer, and after neck surgery he will be fine, it's just a benign mass. I was just about to put a thread up about getting several opinions before you freak out about a severe diagnosis for anything. Because they really had us going there....he was already acting like the person he wanted to be remebered as...when the whole time...people were working under a couple of false diagosis. I think...what if he had committed harry carry as a reaction and it was false the whole time? Not only were they wrong they were dead wrong about something pretty major. Don't be afraid to take your love- to another town. If you get the same prognosis who cares....it's not going to hurt.

The way I dealt with it is....I kept telling my husband...despite the "current facts", that the situation was temporary and not to worry he'll be fine no matter what. According to the "current facts" I was lying...but I did believe my own lie. And I'll be damned if I wasn't right!

I'm sorry to hear the news Sam. I know as much about liver disease as much as I started out knowing about Lymphoma. All I know right now is that everything can change in an instant and don't be afraid to go doctor shopping. Our little world was crumbling....and it turned out that we had been "punked". I even put him through some tests twice at different places because I'm an asshole........I just assumed that these doctors weren't qualified to deal with Lymphoma if he had it, and well guess what? They were incompetent, as I had guessed, on a completely uneducated guess. I assumed this small town wasn't competent enough to deal with a major issue. Because I'm an ass. But as it turns out-in the end- it's true.

Just don't give up hope. That's all I really mean to say. I gave up hope and that's what hurts the most about it. Once you do that you start to lose it, and it starts to effect the sick person. I shouldn't have done that. I didn't give up the fight- but I sure as hell gave up hope quickly in the face of news from supposed professionals. Yeah- a little TMI for ya.

He/She can fight this. And he/she can stay hopeful. Just do the best you can and don't let him give in to the depression.

Many thanks for your kind reply, Cicero. I am so very glad that your husband is going to be alright!

I just got through printing out about a million pages on the liver that I found through Google. Just glancing thru briefly, I don't think it will make for happy reading.

My friend is Native American and got his diagnosis from the Indian Health Care Hospital in Shiprock. I trust that outfit as far as I can throw it. I'm sure there are some fine physicians in the Indian Health Care Service, but I haven't met any. It seems to be the last refuge of the incompetent. My ex-step father (MD) who couldn't put a band-aid on a patient without causing a life threatening infection used to work for them.

Its 200 miles to the nearest city of a decent size, and that's out of state. If my friend is forced to remain in state for treatment, the nearest city is 400 miles away. I have a feeling I am going to find out more about health care that I never wanted to know.

Trying to hang tough. :(

1)Yes.

2)years of advance training and school.

Wow, Cicero, that is great news!

SamIam-i know you are hurting from this blow, but your friend is going to need you so much right now. Be there for him/her. He's going to be exhausted and depressed--let him see the love beaming from you, let him know how much he still matters.

Thanks, Brianna. I've noticed that you are going through a bad time, yourself. I hope all goes well for you, and you have some good friends in real life for support.

I printed out 58 pages of information on liver disease yesterday, read thru all the articles and became extremely depressed. I promised my friend that I will go with him on his next doctor's visit, and I'm going to ask some hard questions. I'm not sure that I should ask them in front of my friend, though, because I'm afraid I already know the answers, and they are very bad. My friend appears to be in the early part of end stage liver disease. According to the info I gleaned, he could die tonight from an esophageal bleed. At best, he's probably got five years without a liver transplant. BUT I'm hoping I'm wrong since I'm not a doctor, just someone who has read a bunch of medical articles.

What do people think about me asking my questions with my friend sitting there, potentially getting to hear very, very bad news? Should I draw the Doc aside and talk privately with her?

I am just reeling with shock over this. I had been looking for an apartment in a nearby, larger town where I'll get more of my own medical and other needs met than in the little town we now reside in. I feel very conflicted about what to do about this, as well. :(

Difficult situation Sam. My guess is that the doctor won't be inclined to discuss the details of his patient's condition with you in private. But, it's worth a try.

sorry for the news Sam. Expect your friend to continue traversing the 'stages':
It sounds like he already is.

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.

Good advice Clod.

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.

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.

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.
:D

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.
:D

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!!!

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

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/

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.

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.

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

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?

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.