Hi,
I am 47 yo and have known for 20 years. I have never told anyone besides my family and healthcare providers about my status. It is good to be able to finally let that burden go. I don’t know how I got it. My mom is neg. I was born in Vietnam but moved to the US when I was 2. I have 2 healthy kids. I live in Virginia. My recent labs show an increase in my DNA from 500 to over 9000. (I have had DNAs in the 2000s with highest at 3350). I have decided to find a new hepatologist after waiting months to finally get scheduled to see my current one. I don’t know that any of the hepatologists I have seen specialize in Hep B. I have not started treatment. I am E antigen neg and E Ab pos. My ALT is 32. The highest it was is 38 which was 4 years ago. All my other labs have been ok except I do have high cholesterol. My last 2 fibroscans and all my ultrasounds have been fine. Thank you for all your comments. I have found the video Dr. Tu posted on Hep B lived experience and updates very helpful. I am hoping I did not make a mistake in delaying the start of tenofovir because I was afraid of possible renal impairments. Kim
Thanks Thomas.
I appreciate your reply regarding working in EU.
Hoping that sooner or later I will be allowed to.
In that regard, did you inform your employer regarding your condition? And if you encountered any restriction imposed by say local law or by clinics regarding your condition when you first applied?
It’s quite jarring the discrimination faced by Hepa-B carriers worldwide, especially those coming from third world countries. Hoping that the stigma surrounding us be cleared.
Warm regards,
Christian
Hi hope4us, thanks for sharing your story and your concerns. I’m glad to hear that you have 2 healthy childrena and that you’re healthy yourself, despite having chronic hep b. So sorry to hear that you’re having trouble getting an appointment with your hepatologist. That’s so strange? Anyhow, want to let you (and others on the forum) that the Hepatitis B Foundation maintains an excellent U.S. and International Hep B Physician Directory on their website. You can type in your city and state, and find liver specialists in your area. Hopefully you can find one near you!!
In the meantime, continue doing whatever it is that you’re doing since you sound like your in good health. And thank you for reaching out all of us. It feels wonderful to finally “come out of the closet” with having hep b. I didn’t publicly share my story until 3 years ago, and I’m 62 years old!! So you can imagine, it felt like a huge burden off of my shoulders. And of course now I wonder why I waited so long?!!! Always, Joan
Thanks, @Joan_Block, for responding. I can’t imagine all the lives you have helped. I really appreciate the Hep B foundation. I have used the info there often. I did find some providers in my state but I am still trying to decide on what to do. I am thinking of trying another provider in the same practice who has good reviews and she lists hepatitis as her area of interest but she doesn’t do fibroscans. If I switch to her, the earliest opening is in August or I can keep my current hepatologist and be seen next week. But he doesn’t see many patients, I don’t think he really hears me, and I didn’t realize til recently that hepatitis isn’t his thing. All his research is on fatty livers which I also have. I think I may need to start treatment soon so I don’t know if I should delay it til I can see new dr but I don6t know if I trust my current hepatologist. He told me tenofovir causes renal impairment. Is this true for both Taf and tdf? I may not be as healthy as I have been as my dna level and TG and VLDL have increased (last 2 likely due to poor eating habits). My PCP has been slow to start statins on me as she doesn’t want to worsen my liver so I have had moderately elevated cholesterol for several years now. I appreciate reading your comments and others on their experience with the meds. It has helped me be less anxious to start treatment. Kim
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
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
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.
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.
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 
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
Thanks a lot
I’m so happy to be here
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
Thanks so much for these words of encouragement, means a lot to me,highly appreciated.
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!
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
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
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.
Welcome to the community, @Civilke! Hope you get what you need out of this site.
Cheers,
Thomas
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