Question for Sean about fibrosis? - Hepatitis Message Board

cudagirl · 06-13-2002, 10:22 PM

I just read your response to askherjohn,I was curious about the stages of fibrosis.I am in stage 1 of fibrosis & my grade of inflammation is a 2 .Now my doctor told me that it could stay like that for 20 years ,That it could possibly not get worse.That alot of people stay the same for many,many years.So I was wondering what you know and your opinion would be greatly appreciated.Thanks! Cudagirl

sean · 06-14-2002, 06:24 AM

Hi Cudie,

Well, here's what I know, as an interested amateur and hep c patient, NOT a physician:

The most common grading and staging system used, Metavir, divides fibrosis progression into four stages--five, really,considering that zero, or normal, is one possible score.

The stages are not exactly mathematically precise, requiring observation and judgement by the pathologist and hepatologistBut in lay terms, stage 1 would be called "mild" usually, 2 is often referred to as "moderate" fibrosis, 3 is called by some doctors I've read or heard as "significant," or even "progressing," and 4 is cirrhosis. Cirrhosis itself--a word dreaded out of all proportion to reality--is not actually a death sentence, not nearly so, and is divided into its own stages of progression--usually two.

Yes, you can have hep c and not progress much along this scale at all. I have apparently had it for more than 30 years and am at stage one--or was two years ago when we biopsied. To slow or even halt fibrosis we must avoid alcohol, stay slim and fit, avoid other liver toxins (do not go near organic solvents, for example), get vaccinated against heps B and A, and so on. [I personally add to that: eat lots of fresh veggies and fruits, and I take a few simple alternatives such as vit E and silymarin. But these are my own choice, not yet well-supported by research for fibrosis fighting.]

You seem to have a good doc, not one of those who is so panicked by what he doesn't know about hep c that he winds up scaring the patient into treatment before figuring out, really, whether it is the best course.

I've known about my hep c for more than two years now and have not as yet chosen to treat--although what I hear about Pegasys sounds tempting.

So, yes, you can go on for quite a while, not getting "sick" at all--at least not sick in any way that we can tell. As was long ago said to me, you are much more likely to die WITH hep c than OF it (I miss you, T!).

As for me, I don't intend to die at all, so I would be the exception, there. Everyone is different.

sean

cudagirl · 06-14-2002, 08:12 AM

Thank you for your information !

Yes ,I have not decided what treatment to do yet also .So I just stay with a good diet & a few herbs as you mentioned.What are organic solvents? I have not been vaccinated for hep a or b either.Vaccinations scare me.Just because knowing they are putting the actual disease in me.Is it necessary ?Who is T?Thank you again for your reply,I really appreciate all the information.Everyone is so helpful here! Take Care!Cudagirl

cudagirl · 06-29-2002, 08:58 PM

I just wanted to put his up again to see if sean would read & respond.I was wondering what organic solvents?Thanks for all your help & inforamtion!

Cudagirl

sean · 06-30-2002, 08:38 PM

Hi, sorry for my tardy response. life has been distracting lately.

Organic solvents are by and large known liver toxins, and include acetone, toluene, mineral spirits-the things we usually think of as paint thinners, paint strippers, cleaners, solvents in lay terms. many paints, polishes, colorants, varnishes, and so on contain these and give off their vapors when applied or while drying. labels sometimes list these agents as VOC's (volatile organic compounds).

dry cleaning solutions, petroleum vapors (gasoline), and other stinky stuff all merit our caution. For the most part, the liver does the body's hard work in de-toxifying these agents. And, although it is tough and remarkably resilient, it can be overworked to the point of sustaining damage (scarring, or fibrosis).

Alcohol and its most troubling metabolic by-product, acetylaldehyde, present a similar case--the liver can handle some of their abuse, but can definitely get over-burdened and begin to show the effects.

when we have hep c, there is reason to think the limit to how much we can take any of these various chemical assualts on the liver is sharply limited.

this is the reason I think of hep c as the perfect way to get your spouse to do all the woodwork stripping, painting, furniture refinishing, and similar work around the house. ditto working under the car's hood or anywhere else gas or oil is evaporating. or....well if you try you can find a good excuse to get the spouse to do almost anything nasty or smelly. for you singles---well...hmmmm, maybe a roommate???

Different topic: each of us makes our own choices, of course, but i strongly encourage you to look more closely into the hep a and b vaccinations. these are not live-virus vaccines, they are not very risky, but on the opposite hand, the risks of fighting more than one hep virus at once are well known and dismaying. With more than one hep virus infection simultaneously, the risks of severe disease seem to skyrocket.

Please look into this issue more closely, maybe talk it over with the docs a bit. I've been vaccinated, and it puts my mind at a bit more rest.

hope this helps.

p.s. T is an old friend from this board (although i've not yet met her). She's the one who first said to me "you are more likely to die WITH hep c than OF it." This statement calmed me immediately and immensely. The saying would have no value, though, if it had no truth, but it has rung true down through the months and now years of learning about hcv, and about us, and I cherish that simple motto as the one saying that kept me calm enough, and made me curious enough, to learn all the other stuff I had to. And I cherish T. for having shared it with me, and at a moment when it did the most possible good.

There ya go.

sean