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-   -   My friend is probably dying (http://cellar.org/showthread.php?t=15555)

SamIam 10-03-2007 07:21 PM

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.:(

DanaC 10-03-2007 07:24 PM

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.

Aliantha 10-03-2007 07:34 PM

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?

TheMercenary 10-04-2007 05:03 AM

Quote:

Originally Posted by SamIam (Post 391765)
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.(

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.

orthodoc 10-04-2007 07:37 AM

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.

SamIam 10-04-2007 12:08 PM

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?

Cicero 10-04-2007 12:53 PM

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.

SamIam 10-04-2007 02:07 PM

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. :(

TheMercenary 10-04-2007 11:14 PM

Quote:

Originally Posted by SamIam (Post 391958)
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.

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

1)Yes.

2)years of advance training and school.

Trilby 10-05-2007 10:22 AM

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.

SamIam 10-05-2007 04:32 PM

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. :(

DanaC 10-05-2007 04:42 PM

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.

barefoot serpent 10-05-2007 04:48 PM

sorry for the news Sam. Expect your friend to continue traversing the 'stages':
Quote:

The stages Kubler-Ross identified are:

Denial (this isn't happening to me!)

Anger (why is this happening to me?)

Bargaining (I promise I'll be a better person if...)

Depression (I don't care anymore)

Acceptance (I'm ready for whatever comes)
It sounds like he already is.

Quote:

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.

Clodfobble 10-05-2007 05:15 PM

Quote:

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.
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.

DanaC 10-05-2007 05:33 PM

Good advice Clod.


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