PS on my question

I also meant to tell you that my dr. suggested not doing another liver biopsy for another year. He said he feels confident that another one in a year will show not much change from the last one five years ago. What do you guys think? Should I be worried about this, High viral load, with normal liver biopsy and normal liver enzmes?

[Pdilly]

From what I have read stage 1 is the longest (some report 15-20 years).  Next is stage two and it is not as long as stage one. Stage three is shorter still then their is the dreaded stage 4. How the disease progresses sometimes depends if you dring and how well you are taking care of you.  Are you seeing a GI or heptologist?

[AMAZED]

First things first...Are you comfortable/confident with your Dr?  If so, then relax.  If it is one thing that I have learned it's whenever you are being tx for ANYTHING.... always be a participant in your tx?  Like asking everything that your little mind can think of ( and here of course ) to your Dr?  Personally, I can only speak for myself, but don't be afraid to put whatever you have as far as questions on the table to your Dr.  You will ultimately be the one to decide, but you need to get all cards laid out on the table then make a decision?  What a about a second opinion?  That might make you feel a little better, eh?  Take care of Shannon, OK?

In Him,
R

[Shannonaleab]

Hi Again! Wow, what a great place for information. I sort of have been uninterested in my Hep C since being diagnosed in 92.The dr. that diagnosed it then was just a family physician and sent me to a specialist. They ran all the testing and didnt seem too concerned. So, I have never been concerned and really have barely even thought of it. But after talking to my GI doc. about this now, and finding out about the viral load, I decided that ignorance is not bliss....So, I have alot of info to look up. As far as stages are you mean the damage/scarring/cirrohous of the liver? Or the inflamation (inflammation)? I have stage 0 for scarring or any damage, and stage 1 for inflamation (inflammation). At least that is what it was 5 years ago. The GI doc I am seeing is very knowledgable. My husband is also a Physician and a friend of my GI docs. I I just didnt understand all they are telling me. I didnt understand how I could have a viral load of 5 million and normal enzmes and an undamaged liver? He also said I have 5 million viral load with low antibodies? Just dont understand how my liver/body is fighting the desease if my antibodies are low. I guess I have alot of research to do. Thank you all sooooooo much. I think also, because I have two small children (yes, Im ONE OF THOSE!) a six year old and a 1 year old that he prefers to wait. I had the six year old prior to knowing I have hep. c and they said the desease does not cross the placenta and the six year old tested neg as well as my hubby.. And so we hired a surro for our one year old so our son doesnt have to grow up alone. anyway....... I am pretty sure due to the kids that the dr. is trying to spare me the treatment until the kids are older, as he said the treatment out right now is pretty harsh to go through. He had told me five years ago, with my desease so minimal he wanted to wait until they came up with something that was less harsh on the body. He seemed to think I had/have plenty of time to deal with this if it comes down to that. I am very healthy, other than this, fit, exercise, but I do not eat as well as I should. I want to try to be more health concious and do what I can to fight this thing. Although the dr. said and still holds to , that he thinks something else will get me before this does. I pray. But you never know. I am pretty sure I have had it since the blood transfusion at either age 17 or the ones I had to have at age 23. So Ive had it for at least 30-35 years. If I am in stage 0 for scarring and damage then that must mean (unless the viral load screws it up) that I can at least go another 30 or 40 years right? before any damage occurs. Well, thanks for listening and helping to answer some of my questions. I do so appreciate it and am thankful I found this site. Shannon
Shannon

[esleighton]

Many studies I have read state there is no corelation between viral load and advancement of the disease. It will however effect viral response to treatment. Another thing I seem to remember is, that many with normal liver enzymes develope damage.

Eric

[jmjm530]

It appears you're getting pretty good overall advice from your doctors and some "iffy" advice might be simply miscommunication.

I'm going to assume your're a genotype 1, the hardest to treat genotype, not sure if you posted that. If you're a genotype 2 or 3, not all may apply.

But as a genotype 1 with stage 0 liver damage, biopsy every five years or so in the absence of other alarm bells sounds reasonable, and waiting another year (six years) doesn't seem a very big deal given your labs.

In terms of liver damage, you should not be worried about what you call a "high viral load" of 5 million because high viral loads do not necessarily correlate with liver damage.

On the other hand, higher viral loads do make it more difficult to treat and maybe that is why your doctor mentioned that. Overall, genotype 1's have around a 40 - 50 per cent chance of a successful treatment which may be another reason they are suggesting your treatment odds are not good.

Within the next year we will be getting a lot of information on some newer drugs in trials which potentially will revolutionize and shorten the entire treatment process. It appears you definitely can wait to see how those trials pan out and evaluate those results with your doctors to see how they pertain to you.

But even if the trials turn out well, if you still remain stage 0 or 1 on subsequent biopsy, I still see no rush to treatment and personally would not treat at this point in time and just keep monitoring my liver.

Should your condtion change -- be it biopsy, labs, etc, -- definitely move to the next step of seeing a liver specialist (hepatologist). Many of us, including myself, have seen liver specialists from the beginning, and even if you stay with your present doctors a second consult never hurts.  

But the important thing is often not the degree, but the advice, and you appear to be in relatively good hands. Hep C can be a very slow moving disease, especially in women who biopsy out like yourself, in what appears many years after exposure. In these cases, the treatment itself can often be a lot riskier than living with the virus which is in many cases without symptons.

All the best,

-- Jim

[chcnme]

Hi Shannon.  Glad you found the forum.  I tend to think (from what you've said here)  that your GI doc is probably right when he said you would probably die from something else before the Hep C ever got you.  Hep C is not a death sentence by any means (and in fact for many millions who have it, it

[copyman]

i posted in your other thread. you say that you are seeing a GI doc that is really good but i have to question why he would tell you that you would not respond to treatment with a 5 million viral load? this does not sound like a doc that knows that much about hep c. just my opinion but if i was you i would educate myself about this disease and not ignore it like you have for many years. this disease has a strange way of sneaking up on you and biting you in the @ss.

[Kalio1]

He may be right and your Hep C is static and hasn't advanced at all, your issue as I see it is you are getting some false info, like your viral load somehow tells you what your liver damage level is or your low enzymes are a guarantee your liver isn't damaged, that isn't correct. It could very well be true that you have no additional damage compared to 5 years ago but then again you what to know that FOR SURE. Also people with Hep C should have ultrasounds periodically to screen for liver cancer.
Being Hep C poitive puts you at much higher risk for other diseases, you might want to research that too. Try earching "extra hepatic manifetations"
Hep C is a slow moving virus in most, but it is nonlinear, you want to stay on top of it.

His point that you have small kids and treatment could be rough is true, my worry is you need to know for sure what is going on and also you need to monitor your illness with biopsies and bloodwork. Im mixed up as to who told you what and who you are seeing now, but Copymans advice that you need to educate yourself about it and see a specialist I agree with. That way you know what questions to ask.

Good luck, let us know what you find out.

[Alady1620]

You will find a lot of information in plain language at Janis and Friends.

I think the site is www.janis7hepc.com.  Somebody please correct me if my memory is wrong on the site address.

[Shannonaleab]

Hello Again
  Thank you for the excellent information and advice. It was very reasurring and acually comforting! I did or have done a bit of research today and see that I am propably in a good position right now with this desease. I know that normal LFTs  are a good sign and that only in the end stages with severe cirrhosis of the liver do the liver enzmes sometimes appear normal or low, as there is not much liver left to make the enzmes. I am absolutely positive Im not in the end stages of the desease. No enlargement, no jaundice, etc. I also know that from my DR. and reading on the national liver foundation site today.......that "almost all hep c related liver cancers appears in patients with cirrhosis of the liver.". I was just a bit mixed up about the high viral load as compared to all else being normal (at this point). I didnt know if that meant that my hep c would advance more quickly with a high viral load or not. But after reading and getting advice from here. I see that it doesnt seem to be the case. Thanks so much you guys. I feel much better. I am definiately going to take a more active role in management of this and strive to become more in the know about it. However, I will more then likely go back to not worrying about it!!  I will just try to eat healthier and stay healthy. Has anyone heard of "Collids for life"  for the liver? Supposedly to lower the viral load? It is some sort of supplement? Just curious if anyone has tried it and actually had it work for them?

[Shannonaleab]

Thank you so much for taking the time to answer my questions. I do feel better. I have a close friend right now fighting metastatic cancer, that has been told she only has two years (at the most) to live.I am not giving up hope for her or hope of a miracle for her. Having Hep C doesnt seem like such a bad thing (at least in my case)compared to that. I will count my blessings and get on with my life. Just try to eat healthier. I suppose with my friends situation it has made me realize that no is exempt from bad things happening to them and I need to be more aware of my own health for my childrens sake.I do trust my Dr. as well as my hubby.My dr. is an Internal medicine dr. as well as a GI. I started with him 5 years ago, so that is why he saw me. However, they do have a hepatologist in their practice now that he consulted with. He just saw me as a favor to my husband, most Hep C patients now go to the Specialist in their office. I could of , but chose to stay with my original dr. as he is a friend and knew he would be consulting with his partner about me.  I just needed a little extra clarifacation from real people that are going through this~~!
           Bless you all that are fighting this and bless all who took the time to write to me. I will stay on this board as the information from people at varying stages of this is invaluable! Thank you!