INTRODUCTION THREAD: People affected by Hep B

Introduction/Orientation
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In Germany, data protection (including of health information) is taken incredibly seriously, so the doctors needed my permission to tell my employer. They already knew anyway because I was going to work in a Hepatitis B lab (probably the safest lab for me to work in because there’s already so much virus around!) and I was already open with my boss about it. I didn’t see any local laws at all that would have stopped me from applying.

Indeed, it’s really disappointing that we still have to live in a world where this discrimination happens. I’m sorry about how you have been treated and hope that by banding together we can make a difference!

Thomas

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Hi @hope4us,

There’s a thread that goes into greater detail about the potential (very rare) side-effects of long term antiviral therapy here: Possible side-effects from long-term antiviral therapy. Basically, renal impairment is very rare with TDF and pretty much not reported at all with TAF. People can be switched over to ETV if they do have some existing renal issues and they want to be on the safe side.

I don’t think you necessarily need a hepatologist that specialises in viral hepatitis (as much of the monitoring can be done by GPs as well), but I think you need to feel like you’re being listened to and your concerns addressed. It doesn’t sound like this is the case at the moment. I suppose if you can seek a second opinion that might be a good option. I don’t know the system where you are, but I would have thought you can be referred to another centre that does fibroscans; the hepatologist themselves don’t necessarily have to do it. Usually, a sonographer would do both my ultrasounds and fibroscan.

Re: statins, I wouldn’t have thought that there was anything wrong with having hep B and being on statins. I think there have been some large trials that show statins even having a slightly positive effect in preventing liver disease progression.

Hope this helps,
Thomas

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Hi Ajaxplus,
Please don’t be disheartened. I’ve only started researching the requirements regarding your work visa application and why anyone would need to disclose such confidential med info plus you were a child at the time of diagnosis. However, as Thomas confirmed, and I being NZ born have studied & employed in Germany including with Immigration.
Medical requirements depend on the type of employment such as ‘food specialists, medical staff’ lung ex-rays are required otherwise no more than that for all other vocations, frankly when I think about the thousands of involuntary migrants in EU who have managed to arrive with just the clothes on their backs not even any form of ID Have you reviewed positions in other EU countries? It is highly recommended of EU millenniums to have had at least one year of employment abroad and visa versa was also a tertiary educator and yes there are other opportunities.

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Hello my name is Brittney I’m 27 in the US Newl diagnosis had no idea found out through pregnancy testing. I’m hoping someone can help me figure out what my lab results mean while I’m waiting for more testing. I can’t figure out how to make a new post. Thanks in advance.

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Hi my name is makhan, I’m 35 years old,so happy to part of this community. I got to know my hepatitis b status since 2018 through traveling process, I was so heart broken but more heart broken when I tested my daughter and she was positive too, I blame myself, blame my country it’s just painful up to now for me, I’m still ashamed to talk about it outside of my family, scared to get in a relationship, don’t want to effects anyone and afraid to tell someone that comes around me, don’t know how they’ll reacts. I’m glad to be able to talk with people of my kind here and praying everyday for the cure :pray:t2:

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Dear @Brittneybc01, welcome to the community. I’ve transferred your post to the lab results thread and hopefully we can put your mind at ease.

Dear @Makhan_Komala, thank you so much for sharing your story with us. I’m sorry to hear about the hardship you’re going through, but know that you’re not alone. There are many people with Hep B living full, productive lives.

Regarding the shame and guilt, I completely understand. I think my mother felt the same thing when I found out I had Hep B, but I never once thought that she needed to feel bad. There was nothing else she could do, she did the best she could under the circumstances. I hope you can accept this too. There are other threads talking about living with hep B here: How have you dealt with discrimination because of your HBV status?, Dealing with the diagnosis in a relationship, and Must I disclose my status to housemates?.

I hope these help,
Thomas

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Thanks a lot
I’m so happy to be here

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Dear Makhan, please don’t blame yourself for transmitting hep b to your daughter. You didn’t know that you had this virus inside you when you gave birth. It’s not your fault! And yes, it would be ideal if your doctor had tested you before you gave birth so your daughter could have received the first dose of the hep b vaccine to prevent infection. But as Thomas shared, he never blamed his mother for his infection. So hopefully you can take some comfort from that.

And as far as dating, please know that blood is a two-way street. You may be worried about your hep b diagnosis, but you never know what a future potential partner may have in their medical history. And the good news is that there is a good vaccine to prevent hep b! So anyone you’re seriously interested in can be easily vaccinated and protected. Remember, you’re a valuable woman who deserves love and hep b shouldn’t be a barrier for the right person. There are more people who will accept your condition than you might expect. If they don’t, then those people don’t deserve your respect or love!! Always, Joan

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Thanks so much for these words of encouragement, means a lot to me,highly appreciated.

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Hi there,
It’s lovely to see a great community here.
I’m Cris, I’m 28 and I found out I have chronic helpB about 8 years ago although doctors believe I most likely caught it via vertical transmission when born. My mum and brother also have it. Up until now my blood tests, Fibroscan and DNA levels have been great with viral load decreasing every year. My blood tests/scans continue to be great but my viral load started to increase according to my latest tests. Additionally my bilirubin is sometimes very high - this has quite been the case over the years. It’s sometimes difficult to keep off google trying to understand why my viral load started to now increase - is it something I’ve done wrong, does it definitely mean that the virus mutated etc. But most days I try not to think about it and just follow my hepatologist’s advice i.e doing my tests etc. So far no treatment but now with my viral load increasing they are keeping an eye out (as ever actually) to see if this is required. I consider myself lucky to have accidentally found out that I have hepB through some travel requirement tests and that it can be managed through screening etc. I am grateful that I’ve been doing great and for the support from my liver specialist team who have been on top of things even with all the pressure and delays seen this year due to COVID. Thank you and keep safe & heathy everyone!

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Dear @Cris,

Thanks for sharing your story and welcome to the community! It’s great that you were able to find out that you had hep B so early on and that you have such a supportive team around you. Staying in monitoring is important and it looks like you’re doing all the right things. Well done!

Cheers,
Thomas

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Hi @chris, I agree with Thomas that it’s great to hear that you’re doing well and that monitoring is very important to maintaining your health. In respect to your question about an increasing viral load, the issue is whether it’s a continued trend upwards or a one-off? Viral loads can be like the NASDAQ in that they can go up and down, depending on when the blood sample was collected. But the key is whether the viral load numbers continue to increase over time. That’s probably what your doctor is watching for.

In addition, age is always a consideration in a chronic infection like hep b. Since you’re still young at 28 years, it’s important to make sure that you follow good health practices such as regular exercise, limit or avoid alcohol and smoking, eat as healthfully as possible, and of course find ways to decrease the stress in your life on a regular basis as well. As your mother has probably told you, healthy habits result in good health. This is especially true for those of us living with hep b.

Thanks for sharing your story and hope that you continue to post and add your expertise and insights to the many valuable conversations on this forum. Always, Joan

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4 posts were split to a new topic: Possible transmission by sharing water bottle

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Hi My name is Jay. I am a Chinese living in Australia for 20 years now. I have chronic hbv since my childhood. I usually visited a Chinese forum HbvHbv for information about the disease, but unfortunately the website becomes not accessible any more. This will be my new home to find information and comfort. Thanks.

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Welcome to the community, @Civilke! Hope you get what you need out of this site.

Cheers,
Thomas

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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.

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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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