I got my biopsy results back and the nurse told me i was grade 3 of 4 in stage 1 of 4 what does that mean?Diagnosis was Chronic Hep C with fibrous portal expansion. I have neen drug through hell over the last month as I am sure all of you learning of our "C" have done. I went to the emergency thinking I had a kidney stone and it was a domino effect after that. I am starting treatment in 4 days the "big combo" they call it. Interferon and Ribovirin. I dont evn know how I contracted Hep C. They say I have had it for 1-3 years. I am a basket case and I am totally pissed off at the world. I cant get the doctor to spend more than five minutes with me and there is no support group within 300 miles of where I live I have found 99% of all my information on the internet. I am not a winer so please dont think that my world is turned upside down and i just need some answers thanks
Everybody feels the same way when they first find out, you are not alone - nobody wants the diagnosis believe me.
First off you do not have a vast amount of liver damage at your stage. There really is no rush that I am aware of (although the docs could have reasons I don't know about I am no doctor) - HepC usually is a very slowly progressing disease. Although at almost stage 2 if you have had this only 1 - 3 years that is rather rare to go so fast. I hope you aren't drinking as that can exacerbate liver damage (not to imply you are just making sure you realiaze that) or taking a lot of medications. You need to try and make liver health a good priority - top priority in fact!
A lot of people have no idea where they got it in the first place and many have never done drugs or been transfused or any of the main ways we get this. Most of us have an idea but will never know the exact details of that.
Hopefully in the next few years (they say next year but we have seen it pushed back before) they are coming out with new drugs that will be added to the existing 'Big Combo' as you call it. It will give better odds and perhaps even a shorter course of treatment. You do not say which genotype you are (most in the US are geno1 which is the hardest to beat (although not impossible I had two 'types' and have been cured for over 3 years) but the new drugs only apply to that at this time (not geno 2, 3, 4 etc).
Do you know which type you are? That is important to know.
There is a lot you can learn right from this forum - most of us who ended up here had docs that didn't know very much in the first place (you would be surprised, I hope at least you have a well qualified doctor who is up to date on the latest advances, a heptologist) but the more you learn the more powerful you will be against this disease.
Ask away. That is why most of us who have long since treated and been cured are here.
We totally understand what you are going through but try and calm down it's not the end of the world...really.
0 = no scarring
1 = minimal scarring
2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
3 = bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
4 = cirrhosis or advanced scarring of the liver
Welcome to the fourm.
As info, I don't who told you that you've had hepc for only 1-3 years. It takes many years to reach stage 3. Hepc is a very slow moving disease and advanced fibrosis occurs after years of the virus attacking the liver.
I think being at stage 3 which is advanced fibrosis, treatment is a good idea. Keep in mind, it's harder to SVR (cure) with the current standard of care (interferon and ribavirin) when advanced liver damage is present but there are those that do. Newer drugs (Protease Inhibitors) with a higher rate of SVR for genotype 1 (75% vs less than 50% with the current standard of care) are expected to be released sometime next year.
Make a list of the questions you want to ask your doctor and insist he spend some time with you. You are paying for that privilege. Also, keep a copy of all your medical records such as blood work, test results, etc in the event you need to consult with another doctor. Educate yourself about this disease because many times we have to be our own advocate when dealing with treatment options.
When a liver biopsy is done, two things are measured: Grade, which measures inflammation, and Stage, which measures fibrosis, or liver cell damage.
Grades can vary from 0 which means no inflammation to as high as 4 which means lots of inflammation. Grading can go up or down over the course of time, because the inflammation is the liver's reaction to the viral infection, and sometimes there's a lot of inflammation, and sometimes there's a little.
Stage also is measured from 0 to 4, with 0 being no liver cell damage and 4 being lots of damage, referred to as liver cirrhosis. Stage is generally progressive, going from a low number to a higher number over time, but usually over years, and for some even over decades. Being stage 1 means that you have some, but minimal damage currently.
Most people who find out they have hep c feel like their world got turned upside down, no doubt about that... hopefully this place will help you feel more right side up again. And you picked the right name for the right juncture in your life ... neverlooknback will help because it's unlikely you'll ever to exactly pinpoint when or how you got the hep c -- the majority of people who have it don't know for sure. It's all just guesswork, probably includes whoever said you've had it for 1 to 3 years.
The best thing you can do for yourself (especially if your doctor isn't the talkative type) is to learn as much as you can about hep c and its treatments. Welcome to forum, and you should definitely keep asking questions. Lots of folks here know exactly the basket of which you speak (they've been there, they've done that, and then some). Take care. ~eureka
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