INTRODUCTION THREAD: People affected by Hep B

Thanks so much for the replies @ThomasTu and @Joan_Block !

Yes I think most recently my DNA has gone up from about 500 to about 1800 in the span of 1.5 years. Before that, for a few years DNA was decreasing. I was e-antigen negative and e-antibody positive in 2019, not sure if this stayed the same. I think the lowest DNA I had was 200, but not for long. But yes, exactly - my liver specialist is monitoring and also all my liver tests have fortunately always been great.

Thank you for the advice - I definitely agree having an active low-stress healthy lifestyle is really important and I try to make this a priority every day - I really appreciate your encouragement!

Best-
Cris

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Dear Thomas,

Thanks for starting this community. To just see so many people who have accidentally discovered that they are Chronic Hep B infected assures me that I am not the only one out there.

Here is my story,

I am 34 years old and I am from Nepal. I had been having kidney stones in the past but it would flush out on their own. This time around the stone was bigger than usual and I was suggested to get a small process done to remove the stone. In pre-operative tests, my Hepatitis B results came positive. It was very difficult for me to comprehend first because the Hospital in which I was being treated, refused to operate for the stone and asked me to get a detailed check-up done.

Medical facilities are not well developed in Nepal. So, I had to travel to India. I was fortunate to find a very good Hepatologist. She ordered some tests such as HBV DNA, HBeAg, HBeAB, Liver Ultra Sound, Liver Function Tests, and Lipid Profile to understand the status of my infection. I had Negative Antigen, Positive Antibody but my Viral Load came out to be 39,900 IUs/ml. My liver also showed minimal fat accumulation. Liver Function was mostly normal with ALT at 30.

While she wanted to start the therapy, she didn’t seem confident if it was required immediately. Hence, she ordered an MRI (MR Elastogram) to quantify the FAT and to check for any scarring or fibrosis. My FAT was at 2.8%, and KPA value was at 2.11. It seemed normal. However, there was a tiny nodule of 6.4 mm which the radiologist deemed benign. Hence, she concluded that a therapy was not required immediately despite higher Viral Load. She has asked me to repeat some tests every 6 months and meet her after an year.

I have felt extremely low since then. Sometimes I just cry when no one is around me. I have kept this to myself and my immediate family. I have adopted a very healthy lifestyle, but at the back of my mind, I am always thinking about the viral load and the havoc it may be raging on my Liver. I am still not confident if not starting therapy right now is the right decision. Its just been one month since the episode but I am still not getting the courage to work at my full potential. Lately, i have been feeling slight discomfort in the right side of my body just below the ribs. Hopefully, I will have it checked soon. Maybe its just in my mind.

With all the positive messaging here, maybe I will be able to lead a productive life.

Regards,

PS. I am not sure if this is the right way to post, but I am unable to understand how to create a separate post.

Dear @CGNepal,

Welcome to HepBCommunity and thank you for sharing your story.

It is understandably difficult to be diagnosed in such a way where you’re not expecting it, but it sounds like you have found out before any significant liver damage has occurred, which is a great thing.

I think that you have responded in great way and committed to doing all the right things; I doubt that many others would or are able to travel to completely different countries to maintain get their clinical monitoring. I think there are many here that would very much argue that Hep B does not mean that you cannot lead a productive life (including myself). This is a condition that can be managed and does not have to impact on your day-to-day life.

I hope this helps in a small way and also hope you get the support you need from the community here.

Yours sincerely,
Thomas

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Dear Thomas,

Many thanks for your kind and reassuring words.

You are absolutely right regarding people not getting chance to travel to other countries while basic testing facilities remain challenged in Nepal. I am lucky in that sense.

There is a stigma regarding Hepatitis in Nepal and it is very evident. With advent of technology we are able to get remote guidance and travel once in a while for testing.

For now, I am consuming all the information I can in the hope that I will be able to contribute to the community in future.

I look upto champions like you and Joan. I am going through each of your posts and learning a lot.

Thanks
Chetan

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Dear Cheten, thank you also from me for sharing your story. It is very difficult to keep this kind of information inside of yourself, to not be able to share it with others in your family or with your friends. I know that when I was first diagnosed it was a huge shock and I was devastated. That was 30 years ago, and back then we didn’t even have the internet!! So I’m really happy that you found the hepbcommunity.org since it’s a valuable resource for information and emotional support. At some point when you’re more comfortable with your hep b diagnosis, it might be useful to find out if anyone in your immediate or extended family has ever suffered from liver disease or liver cancer. Ideally, it would be good if your immediate family could also be tested and then vaccinated if they’re not already infected with hep b. Most people in the world are infected at birth - from a mother who unknowingly has hep b and transmits it to their newborn during delivery - so that’s why here in the US family members are often tested when one person has a positive hep b diagnosis. But I’m not suggesting you bring this up with your family right now. YOU have to be comfortable with having it yourself and then bring it up later.

Anyhow, your lab values, fibroscan results look stable. So your specialist in India is probably wise in waiting another year before starting you on treatment. I am so sorry to hear that you have to travel so far, and that the hospital in Nepal wouldn’t conduct the surgery for your kidney stones. The doctors and nurses there could all easily receive the hep b vaccine (assuming they haven’t already!), and then there would be no concern of possible infection. Unfortunately, even here in the US there is still hep b-related stigma and discrimination due to lack of understanding.

Again, thank you for sharing your story and please keep us posted with your thoughts, questions, and advice to others!! Always, Joan

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Dear Joan,

Many thanks for your thoughts and concerns.

As far as I know, any of my immediate family members have not suffered from a Liver disease. But it is difficult to say for sure as I am the first generation in my family lucky enough to receive this kind of medical care. However, we do have a history of TB in my mother and fathers family.

As for my family, I have them all tested and all of them incuding my 9 month old son are Negative. It’s a big big relief for me as I wouldn’t be able to forgive myself if my son was detected Positive. I plan on getting my mother and father vaccinated as during their birth all these vaccines were not available.

I am slowly coming to terms with the situation. There are a whole lot of things to achieve. The way you have conducted yourself with HepB is an inspiration for us.

I look forward to many many more talks and discussions on this forum in future.

Regards

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So my name is Joanne, I’m 35 and have hepatitis B. It’s actually taken me a long time to say those few words for the stigma, guilt and shame I’ve carried alone in many ways for the last 17+ years.

My story is a family member told me at 18 that there was a chance I could have it. I was tested and it was a confirmed positive, so regular blood test monitoring began. There was 2 immediate family members who are negative. My family member with hepatitis B went onto medication treatment in their mid-50s.

In my late 20s, my family member developed liver cancer and subsequently died close to 4 years later. I must say it was nothing short of a miracle, that the family member survived that long with no medical intervention until the end. The grief I began to carry with that wrestling whether I would so too have a similar fate.

Since diagnosis, I managed to create a tangible invisible emotional web of walls that it was difficult for the most persistent boyfriend to actually get through. I was too scared to put myself in the position of being rejected. I held off from physical sexual advances, because I was so scared of passing on the virus and destroying someone else’s life. I wanted to feel emotional safe and heard before progressing anything.

Up until a recent incident, which made me reach out to a sexual health clinic. I realised I had never been given any information or dialogue to inform a future partner, or navigate a sex life together with hepatitis B. That moment, I felt let down by our health system that over 10+ years of treatment no medical professional provided me details of the resources of Hepatitis Victoria, Hepatitis NSW, Hepatitis QLD etc. What was more helpful was talking to one of those associations to understand obligations in health disclosure, possible transmission outside of blood, which is not clearly published on the website. Legally in Australia you do not need to disclose, but you may want to consider timing and how transparent you want to be with a new partner.

I now am working through my head how to undo the years of damage in which I let this virus rob me psychologically of an intimate partner relationship, due to feelings of unworthiness and possible rejection.

I am sharing my Hepatitis B story now because no one I personally know has it and if it helps someone else on this forum to recognise ‘other’ impacts of diagnosis.

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Dear @JOANNEinAUS,

Thank you so much for bravely sharing your story. I know there are people out there who will benefit and not feel as lonely as they did before because of your contribution. I count myself as among them; i have felt so many of the same emotions that you mentioned growing up.

I am really glad that you eventually found the support you needed, but more importantly I very much appreciate your willingness to be the change you want to see in the world by providing such a vivid description of your journey. I hope you feel like you are traveling less alone now and that you’ll keep sharing without progress with us.

Yours sincerely,
Thomas

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Dear @JoanneinAUS, I want to echo what Thomas just wrote above to you. We have all felt to some degree the same shame and fear that you expressed so well in your message. I am so glad that you felt “safe enough” on this forum to share your story, to let the sunshine in. I remember when I first publicly told my story in 2017 - it was emotional and such a huge burden off my shoulders. I finally felt “whole,” no longer hiding a major part of myself. And I am so glad that you found us and that you know there is an entire community of people who are sharing your journey with living with hep b. And as a side note, you are very lucky to live in AU where there are a lot of resources to support your journey. Please continue to share questions, insights and your experiences since they truly do help all of us!! Always, Joan

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Thanks for your kind responses @ThomasTu @Joan_Block

I acknowledge Hepatitis B has strongly shaped my character, risk appetite approach for life and partly formed the person of growth I am today. A balance of some good qualities and some I want to change.

Even more so, I realise there was a part of myself I never really loved all these years. I need to accept her and forgive her: that it was not her fault she contracted the virus as a defenceless child; neither was it her parent’s fault; she did not know how to ask or navigate questions on Hepatitis B and sex; nor was there enough resources on the internet 17 years ago.

Only recently, outside of immediate family I’ve told more close long term friends about my Hepatitis B status. It has helped normalise ‘acceptance’ that people can care about you just as you are. It gave me more confidence in publishing my story here.

Also practising dialogue will make it easier one day to share with a future partner about Hepatitis B and not be as concerned on the outcome of potential rejection.

What I do know about the Joanne of the future, is she is bolder, more capable, caring and will not let this virus dictate anymore.

By recognising it, the internal belief has transformed from:
‘Joanne will hurt someone and will be rejected. It’s private, continue to carry this burden and isolate so you won’t get hurt’

To now slowly reminding myself and believing…
‘Joanne has a medical condition, which is the same as another 257million globally that do not talk about it or do not know yet.
Whilst there is no cure for Hepatitis B yet, there’s immunity and treatment available, unlike many other medical conditions which have no known solution.
The more I love my own flaws and courageous qualities, one day someone special will love and accept me too.’

#nomorewalls
#thinkdifferently
#bekind
#acceptyourself
#youaresomuchmorethan___.

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Dear Joanne what you wrote above is truly beautiful. It should be memorialized somehow! The truth you speak is what we all need to hear and be constantly reminded of. Please share these same thoughts when you see new people joining the forum. Even now after 30 years of knowing I have hep b, I really appreciate the wisdom in your words, which are so inspiring. Thank you!! Always, Joan

P.S. I love the photo of your bunny. So sorry you have to give him/her up!

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Thank you @Joan_Block :slight_smile: I will try, and perhaps one day meet new friends virtually on the same journey - so you really know you are not the only one with Hepatitis B…

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Hi, My name is Corina from Miami 43. I was diagnosed with chronic hepatitis B a month ago for accident and I was in shock because I never had symptoms.

I have 17 years marriage with a wonderful man and I have 2 kids and they are all negatives! Thanks God. But I don’t know what happened to me.

I am really scared with the information in the internet about the hepatitis. My Liver is perfect without damages and my virus is to low (<10 IU/ml) So no medication for now.

Only know my husband and my family because I worry about my friends reaction.

How you know, this virus is stigmatized and we don’t know too much about this. We don’t have information about it and I believe that the governments around the world do not campaign enough to inform the people about the risks and adults who have not been vaccinated. I have information now that I am looking for it but I came from a country where people have not been well informed about this.

Of course, in my process I am in the stage of assimilating it and not saying anything yet for fear of pointed out but I think of all those people who don’t have their families to overcome it.

I am glad to find this space for us, because we need to know than we are not alone.

I am praying everyday for you guys to find a cure.

Thank you guys, God bless you