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
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.
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!
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.
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.