INTRODUCTION THREAD: People affected by Hep B

Thank you very much Thomas for your work and support to all of us.

Much encouragement and strength to all members of this community.

2 Likes

Dear @availlant, thank you! I missed your response, sorry about that!
I do not think I experience any liver-related problems but as we know some symptoms are not specific. I sometimes have pain under my right rib, which my doctor says is impossible as the liver does not hurt - unless the disease has progressed. My tests show anaemia and cholesterol levels are not right, but both like really just under the norm. Interestingly though, my gastroenterologist claims my liver is completely fine, the other doctor I visited for second opinion said there is mild fatty liver. I went for a fibroscan and it did not show any fatty liver… so I am really confused about that. I am thin and wasn’t an ardent meat eater. I also tested positive for antibodies hep a. I am worried that I might have chronic hep a on top of that - even though it is not chronic, but I guess there are no studies amongst chronic hep b population.

Hi Natti
Sorry. I am only interested in your steatosis. You say your gastroenterologist says your liver is fine. This is echoed by your fibroscan test. The rest are personal opinions without scientific backing… Stop allowing yourself to be confused because honestly, there’s nothing to confuse anybody.
Hypothesis, theories and expert opinions are weighed against science to alive at facts… Simple.

1 Like

Thanks Kinoti, much appreciated. The other doctor who saw mild fatty liver in the ultrasound was also a gastroenterologist. I went there for second opinion. He confirmed though that other ultrasound devices might not be able to pick this fatty liver up because his device is cutting edge…

Hi@Natti
Allow me to continue focusing only on steatosis.
The secret to beat the problem is (as I did)1.Dont take anything sugary
2.Dont eat until full.
3.Reduce carbohydrates.
4.Take extremely little supper.
5.Be physically active.
6.Take lot of greens & fruits
7.Dont take fast foods.
8.Dont eat deep fried foods.
Honestly, most of the time I was angry but sacrificed for greater good. I ate not more than seven spoonful for supper/dinner, or nothing.
Kinoti

1 Like

A post was merged into an existing topic: EXPLAINER: Lab results and their interpretation

Hi all,

I’m Wataru from Japan. Firstly thank you for creating such a worldwide space where we can support each other and build collective knowledge on this tricky disease. I’m almost 30 years old and just got diagnosed with chronic hep B a few months ago because the blood test I took at work detected the elevation of ALT and AST. I’m on medication called Vemlidy (TAF).

It’s sometimes very scary to think about the possibility of getting a liver cancer someday as my test results shows very high HBsAg, which is one of the risk factors. I occasionally experience a surge of negative emotions such as anxiety, sadness and anger.

I’d like to not only gather information and support but also contribute to the community here and in my home country. I am a researcher in mental health, particularly psychiatric disorders like psychosis and depression, and I wish to support others mainly in that sense. I also hope that lots of people will become more aware of viral hepatitis in countries where they are prevalent. My dad has had chronic hep B too and my mum and sister resolved acute hep b. None of us knew any of this and I can easily imagine lots of people who don’t know their condition. I am thinking of how we can spread the awareness.

Cheers,
Wataru

3 Likes

Dear @Clark,

Bienvenido al forum. Like @ThomasTu said we are very pleased to hear you feel this forum is very valuable. Your English is excellent but if you would like any assistance in Spanish please be sure to reach out.

Gracias,

Georget

2 Likes

Hi @wataru ,

Welcome to this community! Our passionate founder, @ThomasTu has put so much dedication towards this community that in the past couple of years, it has grown to what it is today. The Hep B community keeps growing in size and its members represent many countries around the world. We have a united space where we can all feel solidarity and support and learn from experts and each other.

I believe we all at some point suffer from depression and anxiety about how our lives are, or will be affected by CHB. I have experienced it and many community members have posted about how this disease is impacting them emotionally and mentally. Often times, it is new members that have been diagnosed recently and have yet to learn that they can still live a fulfilling life. Other times, it’s members that have had a long relationship (many from birth) with CHB that have had worsened diagnoses. Whatever the situation, and no matter how positive or optimistic a person is, there are always times of weakness and despair and things can seem so daunting, especially if you don’t have a support system. I for one, am an orphan and have no family as a support system. Many others have potential support systems but are too afraid or feel ashamed or that there is too much stigma about this disease; so they don’t share because they feel they will be ostracized, belittled or even discriminated against in their real world lives. For many, this community may be the major (and possibly only) source of support and information that they have.

This community is in need of mental health experts. We have scientists and medical professionals, but I don’t think we have anyone credentialed in mental health. You could be a great benefit to this community with your words of encouragement and advice; whether that’s as a professional in your field or as a community member just caring and sharing. If you would like to contribute as a professional in your field, then please contact @ThomasTu to discuss that possibility.

I am sure you will gain much knowledge and insight from HepBCommunity and we are happy to have you.

-Paul

4 Likes

Dear @Wataru,

Thank you for your kind words and for sharing your story. I hope you can find the support you need here.

I am glad you brought up the issue of support through the mental health issues that come with Hepatitis B. I certainly welcome many more people with this expertise into the community; as @PuallyHBV mentioned many of us with Hepatitis B go through many challenges in this context (we have some threads dedicated to this:Mental health success; Mental Health resources; Hep B’s role in regressing career and mental health; Depression and hep b).

Something that might interest you: the International HBV meeting is being held in Kobe next year and there is usually a community forum that is held in conjunction with this (see Free event: Hepatitis B Community Forum (September 22, 2022) for the one from this year). I’m not sure how far away you are from Kobe, but if you are interested in attending or contributing your perspective, I’m sure that this would be more than welcome (@john.tavis @chari.cohen).

Yours sincerely,
Thomas

1 Like

Dear @Wataru,

I am pleased that you feel comfortable reaching out to this community–it is really special!

The Public Forum has become a valued part of the annual International HBV Meeting, and is coordinated by the Hepatitis B Foundation, with help from the main meeting organizers. It will certainly occur again next year in Kobe. Keep an eye out for information about it at HepBCommunity, or you can check the HBV meeting website closer to next fall when the meeting will be held (Sept. 19-23, 23023). The HBV Meeting website is https://www.hbvmeeting.org/ (the 2022 information is still up; the 2023 information will appear later).

I strongly support the idea of having a mental health expert present at the forum, particularly one who is living with HBV and has first-hand experience with the stresses and fears that the infection causes. Please reach out to me next spring when we start working on the 2023 schedule if you are interested in participating.

I wish you the best!

John Tavis

2 Likes

Hi Wataru
I am excited to hear your concerns on the mental health of those infected and or affected by hepb. As already pointed out, many members go through some mental distress because of one reason or the other. On top is how ones future is with hepb, seconded by whether to treat or not start treatment. Personally, I have had to deal with deep mental distress; acceptance of my current HCC despite being hepb DNA undetected and hbeag -ve. I have also stayed for almost one and a half month since diagnosis without any intervention, to do CECT, then biopsy and waiting for IHC results… Waiting is devastating.
All said, welcome to our community and be sure with your insight to be of Paramount importance to all of us. I also hope you will get the help you need.
Kinoti

1 Like

I can only pray that all goes well my brother. Together in prayer

2 Likes

Hi CNN
I have stayed for long without any treatment waiting for this and that results.
Thanks alot for your prayers. Please continue praying for me.
Kinoti

5 Likes

Hi all, my name is Joseph. I am glad to find this forum. Unlike other similar forums, there are many professionals here and i see more informative posts. I am a molecular biologist by training.
I am a chronic HBV carrier and likely i got the dx since my childhood though I was diagnosed at age 35. I had this dx for over 25 years now. I was very frustrated when i was first diagnosed. After many years research and learning, i am more confident now that i can manage this dx. I live a healthy life styles, no smoking, no alcohol, no drug and stay active. My liver enzyme levels are within normal range, Viral DNA load is low and no cirrhosis so far. My Hepatologist thinks the dx is under the control. However, i do feel tiredness, discomfort in liver area, bloating feeling, loose stool and red skin on my cheeks. My dr told me i do not need treatment and he follows my dx progression twice annually mainly ultrosound and blood work.
Hope a cure for the dx will be available soon. I see there are about 50 treatment methods are in development and clinical trials. Wish you all stay happy and hopeful!

2 Likes

Hi JZhou168
Welcome to the forum and congratulations for finding your right way here.
Its good to learn that you are managing your hepb well. Indeed when your viral DNA is low or undetected, there is little or no injury to the liver consequently development of fibrosis or cirhosis is minimised. However, you must continue monitoring your liver every after six months.
Being a molecular biologist, we expect to tap some expertise from you.
Kinoti

2 Likes

Dear @Jzhou168,

Thank you for sharing your experiences with us. I join @Kinoti in welcoming you to the forum and it’s great having another molecular biologist on board. I hope you find the support you need here.

Cheers,
Thomas

2 Likes

Hi my name is Shanda and I live in the US. I was diagnosed with hep b when I was 17. I didn’t take it serious until the last few years. I’m currently not on any treatment but my numbers are starting to rise and depending on my numbers, I may need to start treatment in 3 months. I’m extremely scared. I do like wine and drink it a few times a week as well as smoke marijuana. I’m aware that this is all bad for my liver and I’m stopping with hopes this will lower my numbers. Thanks for having this forum where I can be honest about myself. I’m to embarrassed to have this conversation with anyone other than my husband.

1 Like

Hi Shanda,

Welcome to this community and I’m glad you found your way here. Please don’t worry yourself too much. Most people that go on treatment (if necessary) do very well with it and are able to lower their HBV DNA numbers; usually dramatically to undetectable, and then go on to live a pretty normal life while taking a pill daily for treatment.

You want to limit the toxins into your body as much as possible- as you already know, but as you can read on these forums, having a little alcohol here and there is not unheard of. I guess depending on how much liver damage you have, would determine how careful you need to be with toxins.

If you can get a hold of some of your past lab results (HBV DNA, ALT, AST, etc.) this would help the experts within this community to assess your situation better and thus give you more feedback based on your results.

Again, glad you found us and welcome to this community, which is now your community too.

-Paul

5 Likes

A post was merged into an existing topic: EXPLAINER: Lab results and their interpretation