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.

[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