Thanks for asking for my input!
I’ve had Hep B for 40 years. I’ve been on antivirals for 20 years. Up until 2 years ago, everything was always fine with lab work and sonograms and over the years, it was implied by most of my physicians, that as long as the viral load was undetectable, there was nothing to worry about. Two years ago that changed, when a sonogram showed a couple of lesions on my liver and an MRI showed they were LIRAD 5’s, later determined by Kaiser’s Tumor Board and UCSF to be LIRAD 3’s. I live near San Francisco and after the lesions were discovered I began to see a hepatologist at UCSF’s Liver Disease & Transplant practice. Fortunately, the lesions have been stable for the past two years. I have become more active with the Hepatitis B Foundation and attended their 4 hour conference back in June. I learned more in that conference about Hep B than I had learned in the past 40 years! For instance, I’ve had minor joint pain for several years. When I spoke to past physicians about it they never mentioned it could be part of living with chronic Hep B. In the conference, I learned a lot of people with chronic Hep B have joint pain!
So, here are a few thoughts on what I think would be helpful in the Forum:
- What a diagnosis of Hep B means, how to ‘manage’ it and some method of sharing the physical aspects, i.e., joint pain that may occur.
- In layman’s language, what it means if your viral load changes, lesions appear in a sonogram, what the different LIRAD and Fibroscan measurements mean, and so forth.
- The HepB foundation website has a lot of good information, but much of it is too technical. For instance the Drug Watch and Liver Cancer Drug Watch pages list lots of drugs with scientific terminology that makes no sense to a layman. Reading through the Liver Cancer Drug Watch list, I would be hopeful because there are so many drugs listed, but once you go to the individual website links, you realize they are drugs for terminal patients, many of which have potentially horrible side effects. Maybe someone can create a list that provides some hope of managing and/or curing HepB and HCC.
- Above all else, use language that we patients can understand!
I realize the forum users come from many different countries and not all have access to quality medical care, so some of my thoughts may not be practical. for the forum.
Thanks for starting the forum!