hep c and compensated cirrohsis

my main question is,   is once you have hep c and compensated cirrohsis of the liver, there really isnt anything to help this other than treatment  - right or wrong.  and eventually without tx, this whole disease will just get worse over time.  my husband was told he would be getting treatment and now all of a sudden they are saying he doesnt need it and he has had this disease for 20-25 years and he could go another 20 years without tx.  maybe so, but 4 years ago he wasnt compensated, so this tells in someways that things are getting worse.

[pjhep80]

right

if he has compensated cirrohsis he absolutely needs to treat...

[frijole]

Did your h get a biopsy?  I think the first thing you need to do is request copies of all medical records -- the ones from 4 years ago and the current ones.  If he was not compensated 4 years ago but is now, it sounds like progression to me.  Is there another reason you might be told this (lack of insurance perhaps)?  

Most of us have had this disease for 20-25 years.  I have probably for 38 years and have very little liver damage.  However without the biopsy you really dont' know.  Treatment is serious but doable.  If you can get the biopsy report post it here and you will get lots of help.
frijole

[Marcia2202]

If Brilorra knows that her husband has compensated cirrhosis, I think that he has had a biopsy to determine this factor.

Brilorra, I assume that you dear husband does not have any other diseases, which could prevent him from being able to treat. And I believe , from what you have said above, that your feeling about the situation is quite accurate.

At the stage he is, I would think it is absolutely needed that he treats his hep c as soon as he can.

If the physician says that he doesn't NEED to treat, I would run out of that doctors office and find a good hepatologist or GI who is used to treating hepatits c.

There are some other members on the forum who live in Toronto and could recommend a good doctor to you.

I wish you all the best in your search for a cure for your husband.

Marcia

[nygirl7]

If the physician says that he doesn't NEED to treat, I would run out of that doctors office and find a good hepatologist or GI who is used to treating hepatits c.

Ditto.  With this specific situation I think you need to get him to a hep specialist...one that sees lots of patients if possible and who is current with all the latest studies and journals.  It just doesn't seem possible to me that a doctor would advise someone with cirrhosis not to treat.

We've all had this disease for at least 20/25 years (for the most part) and the thing we know is this...........just because it might take you 20 years to get to stage 2 does not mean it won't develp to cirrhosis in just two years and from there onwards (where you are now) well you don't really have all that far to go until end stage liver disease / transplant / liver cancer options become reality.

The damage being done is NOT linear meaning it doesn't happen in a straight line. You must remember this. he doesn't have very much liver time left and treatment whether this doctor advises it or not seems to be the ONLY viable option right now.  heck even if he were to transplant you'd like to keep THAT liver nice and healthy right? So you want to get rid of the disease FIRST.

Good luck.

There is a transplant forum if you look for the link about half way down on the right hand side. Those people have all been where your hubby is and perhaps can advise you better than those of us who just have done treatment but haven't had cirrhosis and that much degree of liver damage.

[sldb]

In 9/2004 I was diagnosed with compensated liver cirrhosis from hep c, Hepatologist thought it urgent that i treat right right away due to the condition of my liver, if i did not treat he gave me 5yrs. (not to scare you) . Geno 1a, stage 4 cirrhosis, starting viral load around 12 million.  I treated 96 wks,  became undetectable  b/w 12 and 16 wks,pcr at 18 months remained undetectable (feb, 2008) .  Iam now considered a sustained virologal responder, which hopefully means the virus is gone for good.  Iam not sure why your husband was told he could not tx. but i would definitely get a second opinion. Just had an MRI and micronodularing was greatly reduced from previous scan, and liver appears to be functioning very well.  Although my liver was in pretty bad shape, I was given the option to tx.  You just never know how things are going to turn out, my hep did not give me a whole lot of hope....Leah... PS docs are wrong alot too.

[HCA]

I too have compensated cirrhosis.My doctor is a Professor of Medicine who specialises in viral hepatitis and has an international reputation.He guestimates that I am unlikely to develop clinical decompensation for perhaps ten years but  that I require regular screening for HCC (liver cancer).I am 58 and will treat again with Telaprevir when it is availible.Some studies on decompensation in cirrhotic hepatitis C patients state that upto 70% will not develop complications within ten years if they abstain from alcohol.I am somewhat sceptical and think that is optimistic.Nonetheless he is likely to maintain good liver function for quite some time .
I agree with other posters who suggest a second opinion.Your message is a little ambiguous-perhaps you could confirm that he does have cirrhosis and what the diagnosis is based upon.