Welcome New Member - a

[Guest guest]

a LeeFirstly, I welcome you too this group. We are happy to have you aboard!!Just now, two of our members have returned from a fascinating get together and learned that the new buzz word is "CURED".I only learned that I was infected in 2002 as well. However, it wasn't until 2004 that I was sent to a specialist for the disease. I learned that I was a genotype 1b and like you, already in Stage 3, bordering 4. Thus, I began tx in September of that year. Unfortunately, I finished up the 48 weeks as a "non-responder". For the next 3-1/2 yrs, I just wandered around wondering how long it would take for the cirrhosis to eat up my liver. Then, early in 2009, I was asked to

participate in a Clinical Trial out of Vancouver (Canada). So, another liver biopsy to gage my liver then, showed that I was in early cirrhosis. However, I did complete the trial as SVR. This was confirmed in another PCR just this past July.From my understanding, what we maintain in our systems is the anti-body to the HepC virus. That is why some folks will test positive; but, will have no viral load. It is similar to someone that tests positive to TB; but, doesn't have the disease. At any rate, it has taken nearly 25 years; but, there is the new word now. Also, yes the liver can regenerate over top of the dead parts. That's why our livers will look so narly. I had to have a liver resection just this past April, due to liver cancer. Obviously, the surgeon found enough good tissue, that he was able to remove the two tumours and some extra for good measure.Yes, I agree

with you totally!! Being diagnosed with this disease has certainly changed my life completely. Fortunately, it also changed the way that I look at life and other people who suffer from any chronic illness. My personal battle isn't quite over yet, as an Ultra Sound just this month has shown that I have another tumour on my liver. However, I'm just about ready again to keep fighting the good fight.Gloria

Thank-you for the welcome. I believe I was a member here and a few other groups back in 2002. If things didn't get written down back then, my memory can't find them today. A lot of things about me went by the wayside during my 6 months of Peg-Intron Alpha 2b. Actually, I didn't get to quite finish the 6 months because blood vessels leading to my retinas had closed up. Both eyes have scarred retinas as a result. At the time, that side-effect was not being made public. It was just about the rarest thing that could happen to someone. Well, I'm that someone.

Anyway, in March of 2002, I was diagnosed with Genotype 3, Stage 3, Viral Count 366,400. Two weeks later, a liver biopsy showed that 75 percent of my liver was scarred and I was borderline Stage 4. I was 48 years old at the time, and the virus displayed symptoms all the way back to high school, though nobody caught it. It's anyones guess how I got it because just about all the ways you could get, I was involved in. My boyfriend had just come back from Viet Nam, I had two tattoos done in a shop that catered to the Vets, and I also had an abortion that resulted in my needing blood. All those things happened within 6 months of each other. About the only thing I didn't do was drink alcohol or do IV drugs. If I had, I'd already be dead. Too much liver damage occurred too early in life.

Long story short, I'm in remission. I have the Qualitative PCR tests done once each year, though my gastroenterologist assures me I can stop thinking about it, that I'm "cured". Well, when I was doing treatment, there was no such thing as being cured. There weren't any studies that said the virus couldn't go active again. It is after all still alive somewhere in my system. The one liver biopsy that I had was so painful, and brutal (was awake, no drugs), the doctor won't do another one to see if any liver tissue has regenerated. Last I heard, when the liver has been scarred as long as mine has, it can't regenerate new cells. However, it's still a mystery in my mind, an unsolved one.

You're probably wondering why at this stage I have joined the group here. Remission or not, I'm still a victim of the virus, one with a lot of liver damage. I think when we, or at least me, when I found out I had the virus, life was forever changed. I would never again feel the same way about myself. I don't really have the words at the moment to explain it, I've just never been the same since. I want to stay connected with people like me.

All the best,

Extinction

IncrediMail Letter

©studio reflections

28th October, 2010