INTRODUCTION THREAD: People affected by Hep B

Introduction/Orientation
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First, thanks for creating this forum.

The way I found out I was positive is quite interesting: my 89 year old mother who was in perfect health, got sick (ankles swollen) and admitted to the hospital. Her doc was shocked…and called in a team of various doctors. Well, one of her blood tests came back that she had hep B.

I don’t know if I got it from my mother but my hepatologist and primary care doctor said not to dwell and think about it too much.

I’m now in the hands of a hepatologist that I see every 6 months. When I first went, a fibrascan was ordered which was fine. I get an ultrasound of the abdomen every 6 months which comes back fine. He takes alot of blood for tests and my blood test for my liver is normal. So, I’m still baffled and wonder what will happen next. I really don’t understand the blood tests other than they appear in an app on my phone and my results are right in the middle of the range which is good.

The tests he takes are HBV Real-Time PCR, prothrombin time, basic metabolic panel, liver test, AFP tumor marker, cryoglobulin, and that’s about it. I am reading other user posts about ASL and AST tests but he hasn’t done them. Should I ask him? I am going to see him in 2 weeks is there something I should ask or a blood test I should request?

I feel great and I’m in fairly good shape. When will things start to go downhill or can you live with this virus and have a normal life and age expectancy.

Thanks for listening and I appreciate having this forum to learn about Hep B too. I’m sorry this is such a long post.

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Dear @Beinghealthy, @aiden, and @Penguin50,

Thank you all for sharing your stories and hope you find the support you need on this forum. Please feel free to read around to see if other threads can inform you and answer your questions. The main things are to keep positive and maintain monitoring of your condition.

To answer some specific questions:

ALT and AST tests should be part of the liver test that you have mentioned.

Many people live completely normal and healthy lives despite having Hepatitis B, particularly if it is well monitored and are provided therapy when necessary.

Cheers,
Thomas

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Hi all. I’m in a state of shock. I had routine first trimester labwork done this past week and the Hepatitis B Surface antigen (and neutralization confirmation) came back positive.
Unfortunately, lab work for my OB just pops into my portal so I received this diagnosis by myself bright and early Saturday morning when looking at what I thought would be routine results. (side note: there should be a stop-gap where abnormal results aren’t just sent out like this and are seen by your physician for them to notify you)
I’m shocked and can barely catch a breath.
My previous pregnancies were all negative, I received the vaccine as a child, I have never been exposed to any needles in my life that were not in a healthcare setting, and my husband and I have been monogamous our whole 15 years married (yes, I trust him). My husband is in the healthcare industry so he was routinely tested about 10 years ago and his was negative at that time as well. His healthcare job is low risk for catching it there and has had no incidents that would be a probable point of infection.
We are stupefied about how and where we could have gotten this. I know it can be caught in other ways, but with the most common ways not applicable to our situation, it adds severely to the shock and disbelief.
I’m scared… scared for myself and this pregnancy, scared for my children and spouse… My brain is going crazy starting to link physical symptoms my spouse and youngest child have been having yesterday to possible hbv symptoms I have researched.

I know I just need to take a step back, breathe, get bloodwork done for the whole family (and detailed bloodwork for myself), and speak to the doctor. But as I am sure everyone here can relate when they were first diagnosed, every hour feels like days/weeks/months as my overly analytical brain worries about the unknowns.

I’m glad that I found this community as a resource for support and information.

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Dear @Jjcourage,

Welcome to the forum and thank you for sharing your story. I’m sorry to hear about the terrible time you’ve had and it is really a terrible way of finding out your diagnosis. As you have mentioned, there are a lot of people that have experienced this same thing and understand what you’re going through right now. Please know that you’re not alone and these feelings will pass with time. Also know that you can live a healthy and long life with hepatitis B with appropriate monitoring and support.

You might want to see the other threads about HBV and pregnancy. Perhaps others who have been pregnant while HBV-positive can also comment on their experiences (@Suwang88, @lien.tran, @Nafisa.Yussf, @Joan_Block, @UyenV).

TT

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@ThomasTu Thank you for the encouraging words. I finally spoke with my doctor’s office and they are putting in orders today for me to get additional testing, besides just the positive surface antigen result I already received. I am most scared for my youngest child, in case they have this as well. They received their full course of immunizations starting at 2 months old but we have no idea when or how I may have contracted this (possibly from the child actually as they had extensive hospital procedures in the first month of life). The statistics are scary for contracting this at very young ages. I need to step away from “Dr. Google” until I actually have test results back for myself and all my family members.
I have never been so full of fear and anxiety in my entire life. Your supportive words do help! :slight_smile:

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A post was merged into an existing topic: Support Group For Nigerians

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Thanks for answering my question. I did re-check and do see the ALT and AST tests are in the results and the marker is where it should be, right in the middle which is good.

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No problem, @Jjcourage. Please keep us up to date with how the tests go. Just remember that there is a community here willing to support you through this.

Cheers,
Thomas

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Thanks Thomas Tu, what you did is a great inspiration for me.
I am from Zanzibar-United republic of Tanzania.
I am a nurse living with Hep B infection since 2017 when i got diagnosed at my office.
I fill so glad to find this forrum,which you established.
Despite of being in health field,I am living with overwhelmed stresses of this infection
, precipitated with my parent’s death history,
Both were died because of liver problem(father with liver cirrhosis and mother with HCC).
Actual it wears me a hard time in my life.
I hope joining this community will have great impact in my health.
Again thanks so much for the decisions.you made to establish this community.

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I went today for my 6-month check-up. My doctor was a bit concerned since I was on Bactrim for almost a month for a sinus infection and I have no allergies, so I have no idea how I got it.

When I get my blood test results is it okay to post here for someone to give me some feedback? Thanks again for this community.

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Dear @Penguin50, please use the following thread to do so: EXPLAINER: Lab results and their interpretation.

Dear @saidnuu,

Thank you for sharing your story and the kind words. Much appreciated and hope you find the support you need on this forum. Please know that you’re not alone in this struggle.

Thomas

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HelloThomas,
My husband of 38 yrs was recently (Oct 2022)diagnosed with Hepatitis B. He is 58 yrs old. We have no idea how he contracted it though most likely through several hospitalizations and open heart and lung surgery in August 2022. He is a peritoneal kidney dialysis patient and was supposed to be vaccinated by the clinic, but somehow he slipped through the cracks and never received the vaccine :smiling_face_with_tear:.
He has recovered completely from the surgery but suffers daily with nausea, fatigue and lack of appetite,
Which we attribute to the Hep B. His viral loads were huge and in the range of 1 Billion upon first diagnosis.
He began Viread 4 weeks ago and his viral loads are down to 1 million! He can only take the viread 1 day a week because of his kidneys. We are seeing a Hepatologist who has ordered fibroscan, bloodwork and liver ultrasound. Still waiting for results.
Mostly I’m looking to see if others are experiencing severe Nausea either from the Hep B or the anti viral? We live in a rural location and drive into the city to see the specialist. I have no one but google for information. I’m so grateful to have found this forum for information and support.
Thank you :blush:

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Dear @Carrie_Loschke,

Thanks for sharing your story and welcome to the forum. I’m sorry to hear what has befallen your husband and understand that it’s a stressful time at the moment. It’s good to see that he is improving with medication and hopefully he is able to continue.

Nausea is common when there is an inflammation in the liver and the medication should help with that over time. It is important to keep communication with your doctor and raise these issues if you are worried about it.

Thomas

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@Jjcourage I have been chronic Hep B for 40 years. During that time I gave birth to 3 children.
I understand your anxiety and fear. I was paranoid of passing the disease to others.
I would often pray that others wouldn’t get it from me.
Hep B ruled my life. It’s always in the back of my mind. I have learnt not to dwell on what can happen, but to enjoy my life and enjoy the people in my life. Live healthy, learn as much as you can. This site has lots of information.
Our babies are born and vaccinated straight away, so they will be protected.
It’s not a nice disease as we can’t really share that we are suffering, with others because there is a stigma attached to this illness. And it is a lifelong illness but thankfully for Thomas Tu we have this forum which is extremely helpful, with medical professionals who also have the disease.
I try to be thankful I don’t have some other deadly disease. Hep B can be manged.
Blessings

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Hi everyone,
I am from north of india,
New here on this platform, read people views situations they had dealt with and are dealing with.

I was born with this disease inside me, gentically transfered from my mother to me, I got to know about it in my high school days, since then everythings changed, my mom even after 11years from that accuses herself, of all this happened to me through her, she was innocent but she cries and hurt herself to this day, she is old she is ill herself, i feel soo depressed sometimes, i was born with it and my mother was not aware of it, we both are innocent

Its been 11 years i had learned to live with this the hard way, taking meds on wake up testes every 4-6 months, taking sick leaves and being silent over it,

What i learned is, stop expecting sympathy empathy from this world my fellow brothers and sisters, fight this, sometimes i think why me , why me god, then i realised god is not there, u r on your own, u git this because u r capable to fight this.

People here are sharing all there bad experiences from job to failed relationships,

Trust me i had gone through this all,
This disease made me soo rigidand strong i no longer feel week.

I love u all seriously because u guys are the one who can truly understand me.

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Hi @gauti ,

Welcome to this community. I am glad that it has a positive benefit to you. I am also glad that you have found a way that keeps you strong and helps you deal with this disease in a way that works for you. As you read more and more of the threads and posts, I think you will realize that everyone deals with it in different ways.

One thing you don’t have control over though, is that here, within this community, you will get empathy. Not sympathy from people that feel sorry for you but don’t truly know what you are going through, but empathy from people that understand what you are going through and live through many of the things that you do. We don’t feel sorry for you, we understand you. Being strong is great and a coping mechanism to being vulnerable. I hope that you learn that at least here, you can let your guard down and be vulnerable if you need to be, because we truly get you and you are one of us.

I think almost all of us have gone through ‘Why me God?’ times in our life about this disease. It can be a hard concept to understand how God could allow hundreds of millions of innocent people to die from a disease like this throughout time. I don’t know the answer but I do know you and your mother ARE innocent and I am sorry for the guilt your mother feels. There are members of this community that have shared about guilt of passing Hep B to their child and others that have the same story as yours. Their mother passed it on to them and their parent feels guilty. This is a very common theme since I believe the majority of Hep B infections in the world are passed from mother to child.

Regardless of what religion you are (or aren’t) I am sure many of the members in this community survive day to day based on their faith. I am not trying to push you in any direction, but I hope you can understand that many here do rely on their faith to get by, just like you rely on your strength. I understand that you need to do what works for you to survive day in and day out.

I hope that you will learn that we are all vulnerable here and that we need each other and gain strength through knowledge from the experts and support from each other. I look forward to hearing more from you and more of your story.

-Paul

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hello,
I’m really sorry to hear that your husband might have contracted the hep b virus via hospitalizations and so forth. That is really terrible and extremely unfortunate.

I have a question if you don’t mind sharing. You stated that due to his kidney condition, he is taking Viread only once a week? Is that even possible? From what I understand, you are supposed to take antiviral medicine daily, one pill a day. But are you saying that he is taking one pill in one week? I’m trying to understand if that is what you are saying.
Thank you!

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Hello,
Yes, the Viread is dosed specifically for Kidney disease and Peritoneal Kidney Dialysis.
My husband does not produce urine and the dialysis is the only way to remove fluids and toxins from the blood. We are seeing a Dr. at UCSF and she agreed with the prescription for Viread. I hope this helps.

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He takes one antiviral pill a week

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I see. Given his condition, he is doing a different protocol. Very interesting. Thank you!