HCV and end-failure liver disease

[Mordred]

I need advice on whether I'm experiencing typical HCV symptoms or closer to end-failure liver disease. My blood work shows my liver levels have dropped to half of what they were 6 months ago. A friend said they can drop as you approach ELD. My symptoms are massive fatigue, nausea, no appetite, muscle aches, abdominal pain and swelling (I look 9 mths pregnant), disorientation and confusion (forgot where a friend's was, even though she's lived there 6 years; had to call her on my cell and she thought I was joking at first), and have noticed I can't seem to keep my balance while standing up lately. I do still drink if I go out to the clubs, and take Xanax and Percocet (prescribed). My doctor doesn't seem to be too concerned about my syptoms. Should I just change doctors, or check myself into a hospital and let them start running tests on me.

[sister4ever]

I guess that is "the pot calling the kettle black" so to speak. No, she caught hep c from her husband through sex. Not from partying. However, the reasons behind the illness is what's the problem. I understand now, that it's discrimination to it's fullest. She's sick and I didnt' drink or do drugs and now I loose a sister that took me 34 yrs to find. You see I was adopted and she was 14yrs old. Her mother made her carry me to the county social worker and hand me over. She was a child who was treated horably. Obviously she doesn't want to die but she's an alcholic, no she's not drinking now, but still does drink. It's her coping mechanism and until society steps in and gets her counseling and help (which it's too late now) things will never change. It goes back to, you are a looser for having this disease and that's that. It sucks. If a person fell over in front of you of a heart attack because they smoked too much are you going to keep walking past him? That's what the doctors do to people who have alcoholism and hep c because it's their fault. Well I'm sorry, I love my sister that I never had and feel some part responsible for her situation. Even if she did make a choice. We all make choices, but we don't have to pay with our lives for it. Thank you for your kind words, I appreciate your prayers. :)

[Mordred]

Sorry about your sister. Hollow words. What elase can you say. And I'm curious as to who this woman that you are referring to that can't stop her drinking is. I'm assuming you're posting this same letter about the woman who can't stop drinking to everyone on this site since I'm male. I'd love to talk to her. I'm assuming also that if your sister was drinking and had to be rushed to the hospital for complications of HepC, then you get the same response I received; She should have known better! Now after showing I can be just as hostile as some people on this site, I can only say I am sorry as to what is happening. And I know that is no comfort to you. If your sister caught her HepC from a blood tranfusion or accidental poke from a contaminated syringe, then you have my fullest sympathy and prayers. If it was brought on as a result of too much partying, then that's the pot calling the kettle black. But no matter what the cause, I'll keep her in my prayers.

[Mordred]

Actually went through the entire Thanksgiving holiday with no vodka. I don't approve of the holiday anyway, so I don't celebrate it. And I do have insurance, which makes it even more baffling to me as to how hard it is to find a doctor that doesn't act like I'm 2 years old and have no clue what they're talking about. I've been told to go on a diet or try a diuretic to get rid of the bulging abdomen all the way down to drink a pot or two of coffee so I'm not in bed 16 hours a day. I've done so much research about HepC on the net that I probably know more about the damned disease than the doctor treating me does.

[sister4ever]

In regards to the lady that keeps clubbing, maybe she can't stop drinking and that's the only thing left for her. i just took my sister in to the hospital yesturday. Learned she had acities and hepatic encephlopathy she's very sick. the doctor said she's in end stage and stopping drinking will not help at all at this point. listen everybody, just as hepatitis and liver failure is a disease so is alcholism. and it's fine time people start treating the cause instead of the symptoms. You won't see on my sister's death certificate died from: alcoholism, you'll see liver failure, kidney failure or stroke etc. But, I know and she knows otherwise...

[DonL]

A friend of mine had to give up alcohol after some heart trouble. He is a lawyer and after-hours drinking is a part of his work. He says that the hardest thing about giving up drinking is being the only rational person at the table.

As far as drs go, the first question is insurance because medical procedures is incredibly expensive. Perhaps they are not fully engaging with you because of the money. The local hospital near me is bankrupt because they must take people who can't pay, but are only reimbursed 60% of the cost by Medicaid. Not to say drs do not number greedy scum among them, but not all. I have a test for drs--if their office reading material contains a lot of financial magazines, you are cash flow. This works especially well for alternative health care providers.

As for your friends looking out for you, not their job. Nice to have it happen, but it is ultimately ourselves we have to count on.

Glad to see from your responses you are trying to deal with this. The people here can be incredibly helpful and supportive. As for lifestyle choices--in 1970, my father nearly slammed the door on me when I returned from college with hair to my shoulders. Today, I like nothing better than going to the local Whole Foods Market in a suit. It's all a costume and we choose what parts we dress up for and whether the role is to fit in or stand out.

Some of the Florida people can surely point you at some better doctors and some free trials by the various drug companies. Good luck.

[cuteus]

I was petrified to learn I was stage 1, also 1a genotype.
Stage 2 in 1997, and adding alcohol to the mix?...scary thought.  Some members here are in Fla. maybe they have some ideas of where to get better medical advise.
congratulations for the one day sober. it is no smalll task.
I know what you mean about the holidays without booze. it is going to be hard temptation...but I have to say no, for now. Once I know I killed this virus, and since my liver damage is mild, I might consider occassional drinks. In my case, knowing it might not be forever, will  make it easier to say no, now.  If I had severe damage, I might have to consider forever abstinence, to keep my health.
I wish you well.

[Mordred]

To Soleus: Why on Earth would you begin to ask if I even have HepC. I can think of better ways to spend my time than faking an illness. I've had HepC since 1997. I'm genotype 1a, stage 2 fibrosis, viral load just over 5 million. Yeah, quite the party there!!! And I do not excepct to be "coddled". And I thought I had a sarcastic personality! No drinking over the holiday {which surprises the hell out of even me}, but I have no intention of quitting smoking. I'm sorry if you guys don't approve of the Xanax I'm taking, but I've discussed this with my psychiatrist, and we both agree taking me off of them would do more harm than good. As for the Gothic comment, I don't run around with make up on and dressed in a cape all day. I dress normally during the day {except for taking the piercings out}. So if that bothers you then that's YOUR problem. I just got the results of my AST/ALT levels and they've dropped to half of what they were during my previous blood work. The only thing that concerns me right now, and will be a *****, is getting through New Year's Eve without a drink. It's always been one of my favorite holidays. And my friends know about my HepC and know I can't drink and mean well, but once they get bombed they kind of forget about keeping an eye on me while we're out. And I live in Florida, and yes, the doctors are all asses down here. The first question asked is if you have insurance. I suppose I've been condemned to Hell a little earlier than I thought I would be.

[silvermoon]

You came here asking for help/ info.. you stated your story and asked questions..
you don't seem to want the truth form those going thru this..people here takess this very seriously, as you have seen..   No ATTACKS were made on you..you were simply given the TRUTH..a truth wkich you apparently don't want to hear!
  so..I'll say this.. first of all ..I haven never been addicted to anything  except breathing... I don't have an addictive personality and am extremely independent..  I also used to  be a practicing nurse...   I also have very little patience for addicts.. because addicited or not it is a CHOICE you make everyday, just like I make the choice not to do that *****....   I do really enjoy certain white wines..  I was diagnosed in 2000  and  was going thru a really hard time, and my doc told me that  rather than take something for the stress( which I refused anyway)  it wouldn't hurt me  to drink a couple of glasses of wine a day.. it would be better for me to
de-stress with that than to stay stressed... so I continued to drink  a few glasses a week .. some weeks none, nhowever my stress levels increased.. and stress can and do horrible things to the entire system,,especially the liver..   THEN  in Jan of '03 I was told I have mod/severe cirrhosis...just based on ultrasound , symptoms and blood work...  I have not had a DROP of wine since...but now it looks like severe cirrhosis...
I have had to fight tooth and nail for help every step of the way, and am still fighting..  one problem after another has prevented me from starting treatment...thought I was going to start on the 22nd, but my asthma is kicked up with a continuing bought of bronchitis....  so I am having to get it cleared up fist..
    You said.. 'that you go out with you friends and they all drink  so you  drink'......  
EXCUSE ME!!!!   what are you ....12???????  you HAVE to drink because they do...  BULL**** !!!!
   FIRST  of all.... you have to decide if you want to live or not... that's up to you!!
   SECOND...you HAVE to quit drinking..and sorry but the fact is that if you go in in 'GOTH' getup.. they might have trouble taking you seriously..  and why should they take you seriously if you won't quit drinking??  that shows that you don't take yourself seriously!!
THIRD...you HAVE to go to a different doctor.. a COMPETENT Hepatologist(liver specialist)... take copies of all your test results with you..  I don't know where you live, but perhaps a major medical cernter or University is not too far away...
  Call your state medical board and tell them what's going on.. that your docs don't listen...ask for a reference..
  The confusion  can and NEEDS to be addresssed by a prescription of LACTULOSE... many docs wait until symptoms get so severe that the damage is irreversible..
  Id you refuse to quit drinking, you are not even a candidate for the transplant list...
This disease is UGLY...  it is hard to deal with.. and it takes vigilence.. it takes research and KNOWING more about it than your own doctors...it means staying on top of eveyrhting yourself..being your own best advocate.. and standing up for yourself..and demanding good and proper treatment..
    Any way.. I have said my piece.. and so has everyone else here..do with it what you will..  we are experienced.. some have been thru more than others..  you'd be wise to take the advice seriously..
  It is NOT WHAT YOU WANT TO HEAR..   TOUGH!!!  it is simply the TRUTH!!!!!!!  like it or not..
  So.. don't expect to be coddled here... we are ALL fighting to hard !!   we are all feeling crappy.. and manage to deal with it...  as for myself... I am sorry you're so sick... but frankly.. you're choosing to make it worse..
I am an extremely empathetic and compassionate person... and   I am having to fight too hard  just to keep going everyday to   softsoap it for someone who doesn't seem to care to take care of themselves and their own health..
Mordred.. GROW the hell up..   and stay out of the clubs drinking..  spend you time doing tons of research on Hep C.  cirrhosis, and all that goes with it... save it all to a file on your harddrive.. save the links..   IF you want to live...  Take your health and life under control..
wish you the best...

[DonL]

Where do you live? If you have gone to 4 drs and had the kind of response, something is wrong. Either they don't take you seriously or something else is up. I have had good and indifferent drs, but nothing like you describe. Not all drs are money-grubbing pigs.

If checking into a hospital will get you the attention, do it. Of course, I have to ask whether you are taking them seriously. When I hire a new consultant, if all I get about previous jobs are how the clients were stupid and greedy and didn't let the consultant do a good job, then I have to assume it is the consultant. You haven't found one dr who helped? i don't want to blame the victim here, but I have to ask.

[new-sojourn]

Man oh man, i've been goin' thru it lately.  Mainly b/c I'm feeling so much better!  And I can think clearly-very clearly after 3yrs sobrity and 2yrs hep c free.

Now I'm getting--not really mad b/disgusted-po'ed @ the way people used my mental confusion against me.  Deliberately cheating me out of life love and literally millions of dollars during the yrs of sub-clinical and clinical heptic encepholapathy.

HEY  MORDREAD:  THAT"S WHAT FRIENDS DO!  They know you're whacked and they are laughing on you.  they don't tell you things delibratly and pretend they do.  they steal your money, drugs and booze and tell you everything is fine.  And they don't have to be GOTHS, in fact they are dreseed like lawyers and accountants while suckin' you dry.  They are the rreal VAMPIRES!!

Now as to people resisting tx. On OOB(out of bounds), i was posting about a vet friend who I nagged into tx.  well, he got into the VA vet hep c program, getting help and now getting disability.  He's ESLD and still drinkin' and is plannin' to drink his disability away.

Either he's too far gone-like Mordread seems-or doesn't care.  During Thanksgiving dinner, he didn't eat just drank.  I was very ambivolent about his drinkin' b/had to let it go.  It's his karma.

Now the other part.  Later his partner called and asked the hard questions.  Like is he gonna die.  I had to say yes.  the hep c works 24/7 to destroy his liver.  and if he is abusive and manipulative now, it will get worse when he has $$'s and can't stay the course.  I also told her to quit buying beer for him.  He would 'promise' to eat if she would and then not eat.  I told her people w/ESLD are never hungry-not even smokin' pot.  so quit buyin' him beer and get on w/her studies-she will soon grad the U- and get ready for a life w/o him.

So that's the way it is.  From counciling tx to preparing someone for death.  that's our choices.

I made mine to live, he's making his to die.

I'm so glad I don't drink!  I never could have gotten thru this 'valley of death' I'm walking in if I was still active and infected w/hep c.  Being clean and clear are enough for me.  Too high!

[jonihs]

Okay, bottom line. I am a recovering alcoholic and drug addict, who chose not to begin recovery until my liver failed and I went into ICU w/ a 5% chance of surviving. Alcohol and pills, especially xanax and pain pills, are like miracle grow to the Hep C virus. My liver damage is twice what it would be from just hep c, if I hadn't drank. I treated the hep only after treating the addiction. Alot, I think even most, Dr.'s will not treat hep c until you have been sober 6 months. If you can't quit for 6 months, then you have a drinking problem.Now I am Hep C free for 7 months and sober and clean for 2 years and 4 months. It's doable, but it ain't easy. And it beats the hell out of all the alternatives. Dimentia, death. Neither sounded good to me. And yes, the dementia can become permanent, so I'd be quitting drinking and drugging, and then start raising hell until I got the help I needed.   Good luck! Joni

[jonihs]

I love seeing you're comments lady! How was your Thanksgiving and how are you feeling?   Joni

[new-sojourn]

Do you even have hep c?  This is a hep c forum.  there are ESLD forums and many there are ESLD not just form hep c.

As to drinkin', its a slow suicide either w/ESLD or w/hep c.  Now I'm @ ESLD b/c of hep c.

I'm in a relationship w/an int'l hard rockin', hard livin' muscian.  We met @the Hosuse of Blues in Hollywood where he was playin'.  So don't pull that gotta club/gotta drink/gotta smoke crack-oh no that was me-****.

Since I'm ESLD b/hep c free, I choose to not drink or do drugs, b/do choose to live my nomadic rock n roll lifestyle.

You know what?  No one gives a damn what I do or don't do.

And that 'goth bit', my teenager is even way past that!! and @ your age.  I told her that GOTH WAS JUST FULL OF CREEPY OLD CREEPS!  guess Mother knows best!

[DonL]

As you can see, nothing brings out the beasts in us like drinking with HepC. In re-reading your initial post, my question is whether you have been tested for HepC and ESLD? Seems like that would be step one. Your dr does not seem too interested in your symptoms. I would look for another opinion. However, drinking and drugging are really bad for your liver and should you get a second opinion and a diagnosis, you'll have to decide whether to stop or not.

As far as changing friends, as long as they do not bully, cajole, or talk you into changing your decisions, what the hell, they are friends. If they do, how good friends are they? You can go clubbing without extra stimulation. I am 52 and it took a while to get serious about staying firm, but now I can do it. If you think of "never," it's harder than "just today." Then, tomorrow, it is "just today" again. It gets easier with practice.

People on this board are serious about treating their HepC. A number of us have come (and are going) through various addictions, illnesses, personal problems, and the like, so some of the anger comes from our own personal struggles and some comes from not liking to see someone else in the same position who seems to be ignoring what to do.

Good luck.

[Mordred]

Well I see I managed to **** some people off with my post, although it was not my intention to do so. Is there some sort of secret potion handed out to people on this that magically cures one from ever wanting to drink for the rest of their lives? And to soleus, I certainly have no reason to drop into this site for "idle chit-chat". I call friends when I feel like chatting. I simply thought this would be a good site to find more accurate information on HepC since this site isn't monitored and people don't have to worry about what they say. But obviously any mention of the word "alcohol" here seems to be considered blasphemy by most people here. I've spent weeks on the internet reading about HepC. The sites all seem to have different information on certain areas of the illness. I also would like to hear about tx and how people react to taking it. And yes, I do know you are not supposed to consume alcoholic beverages according to most doctors, yet I watched Pamela Anderson on Live With Larry King, and she says her doctor told her a few glasses of wine with dinner were no big deal, and she has HepC as well. I do appreciate you guys that have answered my post and telling me welcome to the site. As for the ones that decided to send me sarcastic and nasty replies....find a hobby!

[honey1616]

Nope,,,,no magical cure here for me on never wanting a drink the rest of my life.  I was never much a drinker before finding out last year I had hep c but I sure did enjoy a glass of wine here and there.  I started treatment Jan and am now on week 46.  I will be doing 52 weeks and the tx has been doable but there has been rough times also.  I have been fatigued alot and feel fluish at different times and my skin is very dried out.  I lost about half my hair from month 4 to month 7 and then it stopped falling out.  I have had alot of forgetting and my mind feels blank alot of times.  I just pray the tx works and I can go on with my life...That is the plan for now!  Yesterday for Thanksgiving,,,we had people here and seemed like everyone brought a bottle of wine.  It was hard because I did want a glass really bad,,,,just to enjoy myself but right now on tx,,,I'm wanting to give this my very best shot of clearing so will see what happens after I finish.  My life has changed and it is hard but I'm trying to be strong and do what it takes to get through this.  Good Luck to you!

[skiff186]

Most of us fight, scratch and claw with every ounce of will we have to try to beat this thing and to live a normal live.  

When I found out I had HCV I quit smoking, drinking, snorting, clubbing, and a host of other little things that I thought had the
slightist possibility of causing further damage.

If your not willing to give your utmost for survival, I don't have any patience or sympathy for you.  Live is precious man...you better get with the program.

David

[cuteus]

what kind of "friend' lets his friend hurt himself and not care? these friends of yours, do they know of your illness? if they do, how much love are they showing you by allowing you to continue poisoning your liver?
If they truly care for you, they would do anything to help you get off the path of an oncoming train. if they are too busy getting stoned to care for you, it is time to find out.  are you afraid to find out they are not true friends, and thus, you are really alone? scary, I know.

When I quit smoking(1987) and then social drinking(2003), it was because I valued my lungs and, my liver.  Also, I have a beautiful child who depends on me.

At least you can survive without alcohol, imagine morbidly obese people who have to find a way to balance eating(for life) and not eating.  They can never give up food, and food can kill them if they loose control.
It seems as if you are not ready to change your life, not really.
Check the forum mentioned by Califia, at least.

[skiff186]

No... cowards refuse to fight, even when their very lives are at stake, often their in denial.

[Califia]

Of course it's tough!   It's a real struggle to change, to change completely.   But that's what serious illness forces you to do.  It says to us mutate or die.   And if we can't adapt, it's curtains.   The endgame.  Slow suicide.  And suddenly, very, very fast.

You ever see anybody go out on liver disease?  An overdose would be a lot neater.  This is not something you want to flirt with, because it's going to leave all the people around you feeling haunted and you seem like a pretty sweet guy who would not want to put his friends through that.   And the thing is, it's completely avoidable.

There's a Hep-C forum at Delphi called Hep C Out of Bounds where people talk honestly about drinking issues.  A lot of  folks there are in AA.   And a lot of people here are into holism.  We may be taking dangerous chemicals now, but many of us have made serious adjustments to our liver disease by way of diet, and so on.   You make a choice to step up into a higher frequency, and you just do it.   And you know what?  The water's fine.   It feels really good.

As Maj Neni would say to you, if she were here:  Stay in the Light.

[Mordred]

That's what scares me the most. Still wanting a drink and knowing you can never drink again. You have my congradulations. I hate people who tell you to dump your friends and find new ones. Most all of my friends drink, and there's no way in Hell that I would dump my friends just because they drink or do drugs. To me that's something cowards do. Best wishes to you.

[cuteus]

Your dr told you is ok to drink....same dr that is not taking you seriously?

No, we were not all where you are, so don't group us all on your side....You know you have hcv and you choose to continue drinking on a regular basis.
Those of us that were drinking socially before  learning of hcv have stoppped, so we speak from our present standpoint, of having decided to stopped regular alcohol consumption and be kind to our livers, I don't believe that qualifies it as hypocresy.  
What were you seeking when you entered the other forums?   for all to say poor you, so ill, and ignore the fact that your actions have taken you to that point? I think you will not find many that will say that.

we are hypocrites because we are telling you things you do not want to hear or talk about.
good luck in your quest for "health"

[honey1616]

There is no hippocrits here....Just people that state it the way it is.  You make take offense to that as it is the truth.  We are a support group and support each other in our fight against hep c and yes,,,,many are on treatment and it is a struggle so support is great here.  Please reconsider the fight to live and beat this.  We are here for you...

[Soleus]

You definitely need a new doctor if they