INTRODUCTION THREAD: People affected by Hep B

@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:

2 Likes

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

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.

1 Like

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

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.

1 Like

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.

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

2 Likes

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:

1 Like

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

2 Likes

@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

7 Likes

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.

3 Likes

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

4 Likes

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!

1 Like

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.

1 Like

He takes one antiviral pill a week

1 Like

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

Thank you Thomas let me share the test results for last three tests.
My first results showed in March 2022
HBsag 4043 u/ml
Hbe negative
Viral load 54
Liver profile normal
Also showed bit D was deficient at 65 and was given suppliment for that

2nd test in around Sept 2022
HBsag 4369 iu/ml
Hbesag negative
Viral load 60
Vit D tested found to be at 78

Last week I got retest and the results were as follows
HBsag 4693
Viral load 24
Hbesag negative

These were the test results .you can see the Viral load is kind of oscillating and lastly at 24iu/ml a significant drop from 60 if I may say. But the HBsag seems to be on a steady increase .should I be worried the Hbsag is constantly going up and what does it mean ?

Hi anonymous 30
I am excited to read your work and more so your invitation to share on Hepbsag. This is a subject that I have not internalized and would also benefit me.
Kinoti

I would suggest that the changes in HBsAg levels are not very marked (less than 10%) and would probably not be anything to worry about.

Thomas

I do not know where to post in the forum and I think this is the way to introduce myself. Sometimes, I have questions and cannot find the answers in the internet and I do not know where to ask. I am glad that I found this community. Let me start my story.
I am 58 yo female. I knew I am hep b carrier since I was 18 yo. I was in “immune tolerance” stage until I was 35 yo. Then the doctor put me on the only medicine available at that time to treat the hep b “Epivir” for a year and I had seroconversion.Ihave hepb e antibody. I continued Epivir for 6 more months and the doctor said that I did not need to Epivir. Yeah! Do not like to take medicine. I become inactive hep b carrier. Every six months, I check ALT and hep b DNA. My ALT is 6 to 15 U/L depended on the labs (within normal range) and the hep B DNA fluctuated between 2500 to 22,000 IU/ml. No fibrosis and no inflammation. I changed to a new doctor 2 years ago due to moving. He wanted me to do ultrasource once a year which I did. He said that I have bordlined fatty liver because of my slight elevated cholesterol and told me to do more exercise and controlled my diet. He said that I am in a good position as an inactive carrier and just continue to monitor and he also said that in three years, we may have a cure. I think he mentioned “TherVacB” which is in clinical trial in Euorpe. Well, it is a good news. I have a question to ask. This doctor told me one of the reasons to continue to monitor is that may be iirriated. I know there are quite of bit of reasons to continue to monitor. But I forget to ask what is the meaning of “may be irritated” as my ALT is normal and there is no inflammation. May be just choice of word. Any input may be appreciated. Thanks!