Hi, and welcome.
Try not to beat yourself up over how you got this; many of us are in the same boat, and there’s little to be gained by looking back other than to prevent ourselves from repeating the same mistakes.
There are different indices used by pathologists to label liver disease. The one used most frequently in the US is the Metavir scale; I assume this is what your biopsy results are referring to.
Grade refers to the current degree of inflammation, while stage describes the amount of scaring that has already occurred.
If I am interpreting your report correctly, stage 3 indicates aggressive inflammation, and stage 4 suggests cirrhosis. Did you say that you had previously been in hepatic coma?
It sounds as though there may be some confusion between you and your doctor; while hepatic coma can certainly occur with stage 4 cirrhosis, I have my doubts that your doc would allow you to undergo treatment with decompensated disease.
A good layperson’s resource for HCV is:
Click on any subject of interesting the right-hand sidebar; for instance, this will give you some info on biopsy results:
Good luck with your follow up appointment with the doc, and let us know how things go.
Thanks so much for the link and the info Bill. I was in liver failure due to an OD and the pills I took were pain killer with tylenol in them. At that point in my lie I really was so very depressed and wanted to die. Well, I didn't die, BUT I sure added to my liver damage. The amount of tylenol in my system was off the charts ( alt ). My ammonia levels were so high I was in and out of consciousness and hallucinating horribly! Well, I have turned my life around, but am dealing with the consequences. I also have many other illnesses and it is a tricky situation because of the meds I am, that to take what I cant take, what will kill me? On top of the Hep C , developed chronic pancreatitus which is very painful too. Thanks so much for your kind words Bill, and I will be sure to keep you posted after I see my Dr...........Thanks Hand God Bless
I had to smile at your name....I was called "Mitch's Mom" for years.
I'm in a similar situation as you...recent biopsy revealed Grade 3 Stage 4 - compensated cirrhosis. Blood tests they will probably order are a serum marker called an AFP (alpha fetoprotein) as well as some to check clotting factors (platelets, INR), albumin, kidney function tests, thyroid function tests, perhaps iron/ferratin levels just to name a few. Most of the standard blood work, like CBC, liver function tests were done before my BX, and the ones that came after were used to determine (grade) my level of cirrhosis, and, in my case, as a baseline for starting treament.
Take a deep breath and know that treating those of us with cirrhosis has come a long way from the gloom and doom scenario of the past. Read and learn as much as you can from posts here in MH or the one that Bill mentioned...that's a great place to start out especially when you're newly diagnosed. Just learning the lingo can be overwhelming at first!!! Write down questions as they come up, cuz they'll be alot of them and a notebook comes in darn handy!!
Keep us posted on how things go after the labs..........Pam
I have another question. Im not sure if this is how I am supposed to do it by adding to my
original question, but with out having to explain everything all over again..........I was wondering if I am in such late stages of Hep C and possible have cirrhosis, why am I not jaundice? and also is there anyone else on here that is on a lot of meds? I have many other illnesses and a lot of serious injuries. I take a lot of meds a day. They are all supposedly as liver friendly as can be and no tylenol or ibuprofen. I am BP meds, stomach meds, pain meds, and muscle relaxers. I take all of this everyday! Without my pain meds, I am bed ridden and I refuse to live like that. well the other meds I cant eat without, and of course BP meds or I get stroke level BP! So I guess that was 2 more questions.........Thx for the input Pam
Peace and Love all
hi and welcome to the forum, scary news to be sure but take some heart in that you can learn how to help your body overcome all this in this forum.
3 things real quickly:
1. Your biopsy could be off by a grade or stage, meaning you could be only stage 3.
Even if stage 4, there is still hope that tx can reduce inflammation and clear the virus, leaving you enough liver to live many more years on. You must be proactive about learning and tx and life style changes however.
2. You will need to make changes in pain meds. If you got diability, then maybe you can cut back your pain meds. I have a spinal injury, and am not on disability, but I have been able to cut back from 8 to 1 pain pill a day....I just can't move around and do much, but it is better for my liver right now. Absolutely tylenol in a no-no. Opiods do add to liver issues, but sometimes are the only pain killer strong enough to do any good.
I have my doctor give me 5 mg. 1 oxycodone(w/out tylenol) which I cut in half and use one per day. This is one tenth what they had me on for the spinal cord, but I'm convinced part of my fibrosis progression was Rx related since I didn't drink,
3. You will need to get all your test ducks in a row, and I would recommend you get an upper endoscopy to see if your blood pressure and liver disease has led to any bulging veins. It's something to keep an eye on with HBP.
the reason you may not be jaudiced is as I said above, your biopsy may be off, and also, this disease has very few symptoms for many years....which is why many never get diagnosed until late stage. The only symptoms I had for years were fatigue and sweats, and they kept attributing everything to female stuff or whatnots...never tested me
for HCV even though liver enzymes were high. This happens a lot.
anyway, just take it slow, go to Janis, and then, do searches in here for particular subjects that you want more info on.
And take it slow, it can be overwhemlming at first.
You can PM, private message me if you need to talk, or cry, or ask something.
You'll find many in here to be very supportive, which will be very important going forward.
PS. the liver entirely replaces itself every year and a half, so all but the worst scarring can be overcome and replaced with healthy liver tissue. It's the only organ in the body with this fast of a turn around, and this much recouperative power, so this is why it may not be too late for you to treat at all, you could treat and recover quite nicely, but from now on you must take your health seriously, and learn to care for your liver especially.
take care, and welcome to the board.
Hi Jenn - best of luck to you in whatever lies ahead for you now that you know you acquire Hep C so many years ago. Always remember - pencils come with erasers because people make mistakes :) (hmph - attempt at levity, eh?) Gotta have it when dealin' with what needs erasing! You're gonna be fine regardless of your past mistakes!
From reading your story I gather you've had this virus for 20 years (could be better news than not - i.e., acquired at an early age.)
"Serious liver problems may not develop very frequently over the years as a result of hepatitis C infection acquired at a young age. Liver problems do, however, appear to be detectable more commonly over time in persons who have hepatitis C than in those who do not."
I have a reason to believe the above.
I'm going to give my advice to you which is based solely on my experience - personal and from knowing many friends who have been through treatment in the past 5 years, in their 40's / 50's, and who are NOT doing well at all (FROM the treatment in my honest opinion and theirs, too.) Some treated for 42 weeks, others at 72 weeks, others on "maintenance." Many of them are now just a few years away from death, and it was the TREATMENT (not the virus) that took their butts down. They were "warriors." They did all the right things, did the injections, the pills, didn't miss a day, did the Procrit, the Neupogen, ........... blah blah blah (pardon my sarcasm, but the thoughts of all this PRO TREATMENT makes me ill)
So - I'm going to tell you to NOT treat and to tell that nurse at the GI's office who scared you to go straight to Hell or wherever. For one thing - you are STAGE 4 according to them, right? That means that your chances of responding to the treatment for Hep C are slim to NONE!) You think you're living in hell now just feeling the GUILT of what you did so many years ago?? Wait'll you trust some "eager beaver" GI doc to "TREAT"!
Tell the doc and his nurse you would like to WAIT until the NEWER drugs are approved. The other medical conditions you are dealing with will be magnified 20 fold if you attempt to treat this virus.
Percocets have Tylenol in them - get off of them and go strictly for the Oxy's if you HAVE to have pain management.
Tell that GI doctor who's so eager to treat you for the Hep C - "thanks, but no thanks."
Just my honest - straight up. Best of luck. I've had this virus for over 35 years; I'm almost 50 yrs old. I've been near "end stage" since 2002. I split oak for a living.