Hi Dave.,
I may not answer you conclusively on matters of your nursing course but as I have read alot of work from @ThomasTu and he has severally assure us that there’s no discriminations in Australia as far as hep b is concerned. Further, I wish well as you parsue your academic ambitions.
Kinoti.
Dear @Formydad,
Welcome to the community and thank you so much for sharing your story. What wonderful commitment you are showing to your father and I am sure that it is well-appreciated.
I am really sorry to hear what an effect the test results have had on you. Understandably you are very stressed out at the moment.
It definitely is difficult to keep everything straight and remember all of the conversations during a consult. We have started a thread on tips for making the most of them here: Tips on making the most of your consults.
Please keep us updated on your father’s status and how you’re going. Sharing really makes it easier and I hope this community will give you the support that you need to get you through.
Yours sincerely,
THomas
Hi,
I posted a brief intro in another thread but thought I would leave a more detailed one here for people looking at people’s stories, looking for ones similar to their own, just like I have.
I’m 23 years old, and was diagnosed with chronic Hepatitis B on the 4th April 2022, 6 days after my 23rd birthday. I moved to South Korea on the 17th of March and as part of my visa, I had to have a medical check done. I did the tests, then got a text from the doctor saying they needed to call me about my results. Knowing the administrative staff that dealt with these calls didn’t speak the best English, I asked my manager to call on my behalf so nothing was lost in translation so to speak. He spoke to them, put the phone down and said “I don’t know how to say this in English” and opened a translator, Hepatitis B popped up on screen and the next thing I know, I’m on my knees in the throes of a panic attack, crying and thinking “How?”
I went a whole week without being able to ask the questions I wanted to ask because of work and not quite understanding where to get help from. So living in limbo for that long was honestly, the worst part about the process of diagnosis for me. Thankfully, the doctor I have in Korea is one of the nicest people ever, he tried to explain everything as best as he could, he let me have a breakdown in his office and he’s even pushed for me to get tested for Hepatitis A and C, if I turn out to be negative, he’s scheduling me in to get my course of Hepatitis A vaccines ASAP.
Like most people, I only thought of Hepatitis as something you could get through unprotected sex or sharing needles. I have piercings and tattoos and have always been in the practice of watching the artists take needles out of sealed packaging because my mum used to say “you don’t want to get hepatitis or something” (ironic right?) and the only person I have had unprotected sexual contact with got a full screening done before we did and I was there when they got the results six months ago. My mum has been tested for Hepatitis B before and was negative so I haven’t had it since birth. In short, I have no idea how I got the infection and I never will.
I can accept that I have Hepatitis B and what that means for me - a lifestyle change (which lets be honest is something most people could stand to do, I and others with a diagnosis just have more motivation to do it now).
The thing I’m struggling the most with is the “I” word - “Infectious”. The idea that I could infect someone with something as small as a papercut, terrifies me. I had to tell the guy I had unprotected sex with about my status (because that’s the right thing to do) he took it well and despite us not being together anymore, he has been checking in on me throughout the process. I’m single at the moment so I’m dreading having to have “that” conversation with someone when I’m ready to be intimate with them. Hell, I haven’t even touched myself since my diagnosis because I find myself a bit repulsing now, like my body has betrayed me. I’m dreading when my period next comes around because the thought of my blood, let alone the sight of it, sets me off into a state of upset. In short, I sometimes feel like a bit of a leper and am worried people will treat me as one, even if the emotional connection is already there.
All of this and I’m on the other side of the world to my normal support network (family, friends, doctors that I can communicate more easily with, a healthcare system I know)
Despite all of this “negative” news, I’ve tried to look at the positives in the short time since my diagnosis.
This is my new normal. It might be your new normal too, or your regular normal, I don’t know. But, if you have managed to read this behemoth of an intro (more like a life story… sorry) then I hope it brings you some small comfort that you aren’t alone, much like other stories on here did for me.
In the short time that I have been aware of my condition (10 days as of the posting of this), this community has been the thing that has really got me through the most. Knowing you aren’t alone and being able to speak freely with others who understand, is the most liberating thing and I promise you, we’re all here for each other. 
Dear @EH1999,
Thank you for sharing your story and welcome to the forum, which I’m glad has helped you through this. What a great attitude you’ve adopted in response to your diagnosis! It also sounds like you’ve been well-informed and have made a great plan with your doctor.
One thing I would additionally mention to your plans is to have a check-up every 6 months (blood tests, sometimes ultrasound/fibroscan if deemed necessary) just in case things change. Inactive HBV is generally pretty stable, but it’s good to catch things early if they change.
If you need additional help, @mwindisch is a German HBV scientist who used to work just outside Seoul at the Institut Pasteur Korea. He might have some ideas on English-speaking Hep B specialists in the area.
Cheers,
Thomas
Hi EH1999,
Welcome to the community! I am glad you found us, especially at the beginning of your journey with Hep B. I wish I had had the information and support available to me when I was your age.
Your post was very thoughtful and detailed. You have a sharp mind and have done well thinking through this whole process. I think that your logic and knack for writing will be a great addition to this community. I tend to be pretty wordy myself but I was engaged through your entire post.
It sounds like you have a great head on your shoulders which gives me confidence that you will stay on top of your health and be able to live a great life. I know that you were reeling with shock and anxiety from the diagnosis. Try to keep in mind that even though you have this diagnosis, you are inactive and at the beginning stage. You have the chance to keep ahead of this disease and limit the damage it causes and be able to wait out for a cure. You can read on this forum about functional cures coming, not in decades but possibly within the next 5-10 years. That is great hope for you at your age.
It’s rejuvenating whenever we have a new member to the community and they express how they felt when they found it and felt that unity and not feeling so alone in their struggle. I had that exact same feeling and relive it every time I read someone share those feelings. It’s somewhat difficult to define the entirety of that feeling into words. I know that Thomas must feel that his goals for this community is a little more realized each time someone shares their story and also how this community has impacted them in such positive ways. What an encouragement you are, I wish I had half the vivacity that you do.
-Paul
Thank you so much for your kind words Thomas, thankfully I have Korean friends here who have been very helpful and I’m hoping to stay here long term and have been studying the language for a year already so I’m now starting to study relevant language. Good to know an institute that would have more fluently speaking doctors though. My doctor’s medical language is perfect but then the explanation of the medical terminology is where the slight barrier is.
Thank you for your lovely words Paul, I’m grateful you think my writing was engaging. With such an important, yet sensitive subject I try to write with some light humour, otherwise things can seem very bleak. I wasn’t aware there was research so close to a cure. I’ll be sure to delve into the research and do some wider reading!
Hello everyone, I just wanted to share what I have been through lately. I’m currently pregnant and started on Viread about 1 month ago. I went to get my blood test and came back my AST and ALT is double than last test. I just know it does not look good and waiting for my doctor response ( today is Saturday and most likely the doctor will be back on Monday ). I am worried and sad, I just wanted to be there for my baby.
Hi, I am from uk i joined this blog for some advise and gain knowledge about hep b. I caught hep b when i was 13yrs old from back home. I never realised how it could affect my life back than. I got pregnant, had my first son and was explained by docters that hopefully my son wont catch it from me but unfortunately he ended up having hep b despite getting vaccination course in his first year. I think the reason why he caught because i breastfeed him, who knows. I am a single mum but now hes 12yrs old and he doesnt know hes got hep b. I am sooo scared for him because i had experienced some awful treartment from professional docters and dentist the min they find out i have got hep b they would have no expression. I feel like they can be very judgemental. I dont want to feel embarrassed because i have hep b but i do. I feel soo bad for my son hes a very senitive boy and i am not sure how i can tell him? Has anyone else experienced this? Recently i took him to see a dentist for regular check up and dentist asked me right front of him how did my son catch hep b. This was soo hard for me as i struggle to cope with it myself, anyways i answered her however i could to get out of that situation. Lately i cant sleep cuz i am soo scared for my son. I just hope he can get ride of it. If anyone else experienced anything like this please give me any ideas. Btw i have complained about the dentist as i thought she had no right to ask me why my son got hep b.
Hi Ayesha21.
Thanks very much for sharing with us here. A problem shared is a problem half solved.
As a parent, I can understand how it feels to know you infected your child with Hepb and how you are worried for him.
You became pregnant without knowing your status and did your best to protect your son by making sure he was appropriately vaccinated therefore you don’t have to be very hard on yourself. This was something beyond your control.
Your son is only 12 years and I pray cure finds him Strong.
The world of Hepb is getting clear each day and am sure your son will not face ignorant and un emphathetic doctors like it has happened to many of us.
I wish you all the best and please keep us posted.
Kinoti.
Hi Ayesha, I want to echo what Kinoti wrote above as well. It is very tough to be a parent as a single mom. And now you have this medical condition to explain to your son at some point. But the key thing to remember is that you did not intend for him to get the hep b infection. You did what you were told to do to protect him. Unfortunately your doctors 12 years ago didn’t make sure your newborn baby was vaccinated immediately within the first 12-24 hours of birth. That’s the time period to prevent a chronic infection. So please know that you did not infect your son because of breastfeeding him. Breastfeeding is an ideal way to feed your baby and helps protect him from other infections. He was infected because he didn’t get the hep b vaccine immediately after delivery.
As far as talking to him, it is important to not feel guilty about his infection. It’s not your fault. You have to look forward, not backwards. Let him know (and you should know as well) that hep b is a medical condition that can be managed with a healthy diet, exercise, plenty of sleep, low stress levels, and medications if needed. Hopefully there will be a cure in the next 10 years! It’s very important that you and your son don’t feel ashamed because of hep b. Just as other people have diabetes, asthma, MS, high blood pressure – hep b is just another chronic condition. Neither of you did anything wrong! Please continue to share any other thoughts and concerns because everyone on this forum is here to support each other and give each other the confidence to live as fully as possible. Always, Joan
I do hope that i am at the right place to briefly introduce myself(my apologies if i am at the wrong place). I am glad to have come across this forum and i have spent considerable time reading through the different post, trying to dig myself out of the dark pit i find myself in. I received a simple email from my Primary Doctor of my exposure to Hep B on March 29, 2022, but i did not think much of it. To be honest, i did not even know what it was, as I was only aware of Hep C. How did i even get it?
What i have since found out has taken me on a downward spiral I can’t seem to stop. I take consolation from the expert advice on the forum that it is not all doom and gloom, but some days are very difficult.
I am so glad to have come across this forum. The fact that i am even writing this out is helping, and hopefully, it will help me to be more productive. I do have a lot of questions/clarifications, but perhaps, this is not the right tread, as this is just the introduction. I will look for the right tread to ask my question.
Thank you Dr TT for starting this forum….Thanks to all the Subject Experts for their advice……and thanks to all for sharing their experiences
Dear Yaoman, you are definitely at the right place. We’re so glad that you found the hepbcommunity.org forum!! Before you go too far down a deep hole wondering how you were exposed to the hep b virus, it is important to find out whether you are actually infected? Did your doctor send copies of your blood test results that indicate you are infected? Being exposed does not always mean you are infected. So here are some practical suggestions for your consideration:
(1) Call your doctor to ask for copies of your blood test results OR schedule an appointment to talk to him or her directly about the letter saying you were “exposed.”
(2) If there are no blood tests, then you can ask that your doctor orders the FULL PANEL for hep b (HBsAg, HBsAb, HBcAb). For a quick summary of these hep b blood tests, visit the Hepatitis B Foundation’s Blood Tests page for an explanation. Print a copy to take to your doctor’s office if you want to be sure they order the right tests.
(3) Once you have blood test results, feel free to take a photo of them and post to this forum again and many of us can help interpret them for you.
But the bottom line in my humble opinion, is that you contact your doctor to learn more about the letter they sent and whether they are writing to say you have been infected with the hep b virus OR if you have been potentially exposed. There is a difference and only the full panel of blood tests will help determine your actual situation. Thanks again for your sharing and please keep us posted. Always, Joan
Hi yaoman
Be strong. Testing positive for chronic Hep b is not a death sentence or the end of life. Majority of us in this forum were caught by surprise when we tested positive. We mourned and after that we have lived long to be a testimony.
Honestly,after my many years of positivity,I never stop to think about my death from hep b because it’s a non issue to me. I live my life like anybody safe taking a tablet per day. This doesn’t bother me as eating food doesn’t.
Feel comfortable in this forum, read widely and ask any questions and am sure you will get the help you need.
Kinoti
Thank you so much for your advise/suggestions……this will help me with my discussion with my doctor next week.
Thank you Kinoti….your positive, encouraging words is just what i needed to start my day!
Hi, I am Sarah. I live in New York, the U.S. I’ve been living with Hep B my whole life, and I am so glad to find this community. For the most part of living with Hep B, it’s been a mere inconvenience of getting blood drawn twice a year. I never smoke or drink, which don’t bother me. Though when I was in my 20s, I had to constantly find excuses to dodge the question why I didn’t drink. And whenever I had a new partner, “the talk” always gave me tons of anxiety, which is why I have stopped dating for a very long time. Recently, my liver enzyme has elevated a lot, and my doctor is asking me to start Vemlidy. I am very anxious about it because it’ll be a life long commitment. I won’t be able to afford the drug without health insurance, even though I have health insurance under my employer now, it makes me anxious about what’ll happen if I get laid off. American healthcare system is awful, and God forbids if I lose my job, what should I do then if I am on Vemlidy? I’d really love to get some insight from those who are taking Vemlidy, and learn about your experience.
Hello everyone. My name is Adam, and I’m 29, living in the US. I found out that I had hep B when I was 18, and it isn’t something I had from birth, so It’s been 11 years now. I’m so glad I found this forum, and thank you everybody for sharing their valuable experiences. I’ve not been very good about keeping up with my appointments during Covid, but it is important I get back into that routine. When I last saw my doctor back at the beginning of 2019, there was talk about me starting Vemlidy, as my HBV DNA levels were at 11,000 IU/ml. Like @SL12345 above, I was very apprehensive about starting medication, as it is something that will be for life. Furthermore, making sure you have access to the meds is even trickier, given the insurance situation.
However, after reading the forum about “Starting Treatment,” that will be the conversation I will be ready to have when I am able to see my Gastroenterologist again, hopefully soon.
Welcome to the forum and thanks for sharing your stories. I hope you will get the support you need from this community. You are definitely not alone and there are others who have shared your experiences here.
@SL12345: as Adam mentioned, starting treatment has been quite a well-discussed topic here: Deciding when to start treatment. It definitely is a big decision in the US, but there are some coupon schemes available (e.g. as mentioned here and here). @Eddie has also shared some great news about reductions in price here: Hep b medications info.
Hope this helps,
Thomas
Hi Adam and Sarah, I hear your pain about the decision to start treatment or not. Access is always an issue because of the cost. And since we don’t have universal care in the U.S., it’s reasonable to be concerned. So first all, Vemlidy (or TAF) is the newest drug on the block and is still under patent, so it’s the most expensive. Considering you’re both relatively young and don’t have to worry about osteoporosis, you could talk to your doctor about starting Viread (tenofovir disproxil fumarate or TDF) which is off-patent and is available as a generic - much, much cheaper! Also the other drug is Baraclude (entecavir) which is also off-patent and cheaper.
Please know that I’m not trying to dissuade you from Vemlidy. I would just encourage you to speak to your doctors about your concerns about insurance, cost and whether an alternative to Vemlidy is possible. And talk to your doctor about the option of switching to a generic option if you do lose your job/insurance. Just a few things to think about. Always, Joan