In 2007, Kaiser gave me 5 years to live. Well, it’s way past 2012 and I am still kicking. However, I did not start treatment till 2017 and I should have started back before 2004 after I was first diagnosed with fibrosis and my numbers were well within the range of needing treatment. Back then, there wasn’t many options other than Interferon. Then, I think it was around 2008 or so, a hepatologist had mentioned barraclude but he ended up retiring before I ever decided to start treatment and then I let it go. My career and fear of treatment and I guess not being educated enough about CHB and antivirals made me wait until I started having worsened medical issues and they diagnosed me with cirrhosis in 2016.
It’s the quality of life issues that I deal with even though I try my best to stay mentally and physically in the game. I do a lot of volunteer work because what they say about “giving is receiving” is so true. When you help other people, often times it does more for you than them. I do have to say that with all the conditions I have, I am still able to do a decent amount. There are times however, that things are harder and I may not post on here for months and other times I may be more actively posting. It’s the daily pain that gets tedious but the random GI flare-ups that are excruciating when I am just pleading to God to help me make it through, that are so rough.
I didn’t have much of a support system and had never even had any interaction with someone else with CHB until I found the hblist which eventually evolved to hepbcommunity. When I first found the hblist and got to read posts from people that had a lot of the same fears, medical issues, life struggles, isolation and had CHB, it was like a lightbulb turned on within my spirit and I felt such less isolation knowing I was not alone. That’s why I have been hoping that those that have cirrhosis would be more outspoken within this community, so that maybe I can find even more commonality with what I am experiencing within this subset.
By the way, your mother sounds incredible and I hope to have even a fraction of that fortitude.
@ThomasTu would you mind explaining how someone’s genotype plays a part with HBV, CHB and cirrhosis?