Thanks for the advice, Thomas. That is helpful to know. Normally, I rarely take medication, which makes me a bit hesitant to take a drug daily for one year. But if it doesn’t have any serious side effects and helps my body fight the infection (even in the acute phase), maybe it’s a safer option than waiting for the virus to hopefully leave my body in 6 months.
wow, I am impressed by the community.
I am Linda, 27, and have chronic Hepatitis B since birth. My mom had it, so I had it even though I got vaccinated the first day. It now had been 6 years that I am successfully on Tenovofir. I am here because I am scared of the impact hepatitis has on my dating life.
Welcome to the community, hope you get the support you need here.
We have had some discussions on talking to others about hep B. You might want to check out the following:
Hope these help.
Linda how do u have it if you got vaccinated
I have been a member since mid February and have been pretty active in Hep B research and reading the stories you all have shared. I also attended this past weekends ASSLD conference and the new research around testing and future medicinal solutions brought me a lot of hope. Thank you @ThomasTu for starting this forum and shout to @Joan_Block for constantly sharing your story and thank you to so many of you have shared your stories and expertise, it has really helped me during some very tough mental valleys this past month.
I’m 34 y/o Asian American woman (born and raised here in the states) and I’m newly pregnant with my first child. I found out I had chronic Hep B at my first pregnancy screening on February 12th (talk about a jubilant Valentine’s weekend) my mom still needs to be tested to see if I was born with it or if this something I acquired in my youth. And as so many of you have also experienced, that first notification of being diagnosed with something chronic, let alone a virus that I’ve never even thought about before, was devastating and it left me broken. I feel blessed to have love and support from my husband and close family during this journey. Being in genomics research myself, I started researching and scheduling all of the appointments to gain knowledge to better grasp my situation and solution moving forward. Outside of my HCP and OB/GYN I have my first visit with an Infectious Disease doctor tomorrow. Here are my current stats as of my Feb bloodwork.
HBe Antigen: negative
HBcore Antibody, total: positive
Viral load: 3000 IU/ml
Total Bilirubin: 0.2
I’ve always lived an active and healthy lifestyle so all of my metabolic standings have been within range for years, which stumped my doctors as it never alerted them to do this test. I also requested for an abdominal ultrasound which was deemed unremarkable with no finding of disease. I’m curious of your thoughts, should I also request for a fibroscan to see more of my liver health? Can this be done while pregnant? My concern is this 3000 viral load is silently wrecking havoc on my liver health, because by certain guidelines that load would warrant me for antivirals, which is also unclear to me at the moment if pregnant women only are dosed in the 3rd trimester or throughout their pregnancy (I’m only cusping my 2nd trimester).
Thanks for any feedback and THANK YOU for the community. Everyday has highs and lows and the lows for me have been around the fear of not being around long enough for my family that I am just beginning. But I see so many inspiring stories on here and it seems you can and that gives me a lot of hope and I hope for many of you it does too.
Hi Tara, thanks so much for sharing your story and really happy that you have a loving, supportive husband and family. That is what gave me the strength to continue on after being diagnosed at age 30 years. In fact, my husband changed his research focus from HSV to HBV after my diagnosis, and then started the Hepatitis B Foundation (HBF) since there was no nonprofit organization dedicated to those of living with chronic hep b. Anyhow, the Hepatitis B Foundation’s website has accurate information about [HBV and Pregnancy] that(https://www.hepb.org/treatment-and-management/pregnancy-and-hbv/) with CDC references that can help you during this time. The key facts are that treatment in the 3rd trimester is generally recommended for women with HBV DNA levels > 200,000 IU/ml to reduce the viral load before giving birth. But this is of course something you can discuss with your doctor. And in regards to further imaging, you can certainly wait until after your delivery since your labs don’t indicate anything urgent is needed at this time. Finally, the most important thing to remember is to ensure that your newborn receives the first dose of HBV vaccine and HBIG in the delivery room! Yes, the CDC and WHO recommend within the first 12-24 hours of birth, but we at the HBF urge families to demand these drugs in the delivery room to maximize protection from an infection since time delays can occur after a delivery. You can read more about this on the HBF website, but I am a loud activist about urging women to task their husbands/partners/doulas to make sure the newborn is protected after birth. You as the mother will be exhausted and eager to hold your baby. But we only have one chance to protect our newborns from a chronic infection. Ok, now off my soapbox. I can reassure you personally that you should expect to live a long, healthy and happy life with hep B. I just turned 62 and after a rocky start with the HBV diagnosis, am living proof that it won’t stop you from living a full and productive life. We have 2 grown children who are married, and a new grandson. If you have a chance to see the #justB stories on the HBF website, they are inspiring as well. And yes, we are all so grateful for this hepbcommunity.org forum to share our stories, support and faith that there is indeed a full life after a hep b diagnosis!!! Always, Joan
Hi Linda, I want to echo what Thomas wrote to you and the links he shared. So first, I hope that you and your mother are both being seen by either a liver specialist (hepatologist, which is a subspecialty of GI or gastroenterology) or an infectious disease specialist, both of whom should be knowledgeable about the care and treatment of chronic hep b. Even though you’re young, it’s still important to start being monitored regularly (once or twice a year) to ensure you’re healthy and that your liver is healthy. And of course for your mom, it’s important that she also is seen regularly because as one gets older, the risk of disease progression to cirrhosis and/or liver cancer increased. The earlier any one of these liver conditions are diagnosed, the greater the chance of an intervention being successful.
As far as dating, however, I like to remind people that “blood is a two-way street.” Although of course you’re worried about your hep b status, and sharing that information in a new sexual relationship, remember, you are at the same risk of contracting something from your partner. This is good to remember so that you don’t feel like you’re the one with something to hide or have something shameful. We all have medical histories - in your case, the hep b infection was contracted at birth. Your lifestyle choices or behaviors didn’t cause your situation. Thus, there is absolutely no reason to feel shame or fear. Remember, if the person can’t accept or seek to understand your hep b diagnosis, then they’re really not worthy of your attention or love. Yes, it could be painful to experience rejection, but, ultimately, it’s a good check on the person’s worthiness of a long-term relationship or marriage!! And finally, if you were born in the U.S., then universal infant vaccination for hep b was started in 1991. Which means if you date within your cohort (30 years or younger), then it’s very likely your partner would have been vaccinated!! Thanks again for joining and hopefully we can provide the information and support you need. Always, Joan
HI Priyanka, in answer to your question about Linda’s situation, it’s possible because she may have either been given the first dose of the hep b vaccine too late (newborns should be given the first dose within the first 12 hours after delivery, according to the CDC) and/or her mom’s HBV DNA (viral load) was so high that the vaccine wasn’t effective (this is why women with high viral loads are recommended to start antiviral treatment during their 3rd trimester to reduce their loads before delivery to reduce the risk of infection to their newborns). Hope this helps . … always, Joan
Hi Thomas, wow I really do learn something new so often in this forum. I actually had not known that antivirals were recommended during an acute or new expose to hep b. Of course I knew HBIG and the HBV vaccine is given after a known exposure to HBV (within the first 7 days after exposure) - which is something that can occur especially in a health care setting via needle sticks, etc.- but it’s news to me that entecavir would be given for up to 12 months for someone with an acute infection. Although I’m not sure what “3.529E+06 IU/mL” actually translates into (is it 3 million or 3 thousand?), maybe it’s considered so high that an antiviral would be warranted. With that said, I really appreciate your expertise, and am glad folks like Paul and others can directly benefit from it. Thanks so teaching me something new!! Always, Joan
Please do anyone know the interpretation of this my wife lab test? She was diagnosed with hepB positive since 2015…but she just went for these blood test and her results is here…does this means she is still possible or negative now ?
Hi Everich, it appears from the blood test results that you posted that your wife has lost the hepatitis B e-antigen (HBeAg) so she is now eAg negative. AND, she is producing anti-HBeAg (or HBeAb). This is good because it means that the virus is not reproducing as much; therefore, decreased viral activity means less inflammation of the liver (less damage overall). Although your wife still has a chronic hep b infection, the fact that she is eAg negative and eAb positive is a good thing for the health of her liver, and also it means she is less “infectious” because there is less virus circulating in her bloodstream. Hopefully others like Thomas or Mark can also weigh in! But please be reassured that these test results are good news. Always, Joan
Yes, I agree. You don’t want to stop taking,
Ok thank you for your response…I and my wife is planning having kids that’s why I’m curious to know everything about her… I’m hoping I’m not gonna have any fear of sleeping with my wife so we can have a child at least…I myself is have been tested and verified to be negative from the one till today… I’m hoping my wife can be negative also. I’m glad her results test sounds good to me…
Hi Everich, I can’t remember if you have completed the hep b vaccine series? It’s 3 shots over 6 months. If you have, then you could ask your doctor to order a simple blood test to check if you have developed the protective antibodies called Hepatitis B surface antibodies (HBsAb or anti-HBs). If this test is positive (or > 10), then you are fully protected and don’t have to worry at all about getting infected from anyone, including your wife. And the fact that your wife is now e-antigen negative and e-antibody positive means she’s even less infectious. So between completing the vaccine series, testing positive for protective surface antibodies, and your wife’s less infectious infection, then you should start getting busy having children!!! Lol. Always, Joan
Hello, I am from California, and have chronic HBV from infancy. At 12 years old, I learned of the infection when my brother donated blood and the blood drive alerted us. I think this was about the time I became very depressed and suicidal, and felt like I was defective. Nowadays, I am thinking, “am I defective enough for this phase of COVID-19 vaccines?” It’s when I realized these thoughts were ridiculous. I hope to join a community when we can support each other and show that we are not alone.
Welcome to this community, really glad you found us. I hope you see with all the people that are here with the condition, you are not alone and that Hep B doesn’t make you “defective” at all. It is just a condition many of us live with and manage from day to day.
Thank you for setting this up. We did not have many resources in the 90’s, so this forum is incredibly helpful. Many people are at a loss and it’s great that a community can help them navigate through their conditions.
Dear TitanMoon I would like to echo what Thomas wrote as well since many of us on this forum have gone through similar experiences as yourself. Fortunately, some of us (like me) are probably older than you and can reassure you that life does get better! The key to overcoming hep b is to remember we are more than this diagnosis. As one 16 year old boy told me years ago, he wanted to be “bigger than hep b” and achieved this by riding 300 miles from Florida to Pennsylvania with his best friend at age 18 years. I was always inspired by his determination. As someone who was diagnosed in the “dark ages” when hep b patients were treated like HIV patients (both were kept in isolation rooms where nurses and doctors gowned up, gloved, wore masks and protective eyewear - talk about feeling like an alien!!), having this kind of forum would have made the world of difference to me. To know there were others like me, leading normal healthy lives, and that hep b didn’t have to be a stigmatizing and isolating condition would have meant it wouldn’t take so many decades to finally share my story. Anyhow, I’m really glad that you found us and are interested in sharing your experiences and inspiring others on hepbcommunity.org. Welcome!!! Always, Joan
Doing OK. Monitoring creatinine levels which have been high the past couple years…
Was diagnosed around 2004. I was feeling fatigued, so when I got a battery of blood tests, the result was positive for HepB. Was given ultrasounds, and then a tumor was discovered.
Hi Jan, thank you for posting on the forum. We’re all here to share experiences, advice and support. Glad to hear that you’re “doing ok” and that your creatinine levels are being monitored. Are they high because of an underlying kidney issue or have you been on tenofovir (TDF) for hep b? Sounds like you had a rough start when first diagnosed with hep b in 2004 - hopefully the tumor is no longer an issue? Any additional information you’d like to share with us would be helpful. In the meantime, so glad that you’re part of the hepbcommunity.org forum! Always, Joan