Hello everyone. I can’t find the words to express how happy I am to have found you after all these years of living in isolation with this diagnosis. I am a 46 year old female primary care nurse. I was diagnosed with chronic hepatitis B during my pregnancy. I was 22 years old. I never knew where I got it (maybe as a child or through unprotected sex). I live in Canada and I am the only member of my family who has it. The diagnosis was very traumatic for me. Hepatitis B has had many impacts on my life (including rejections in my career choices). All my life I have lived with fear, shame and guilt. For the moment, I don’t need antivirals. I am extremely happy to have found this community. Your presence and words touch and comfort me. I hope I can contribute to the comfort you are giving. I look forward to talking with you.
Hi @Mmaylica ,
I’m happy you found us and totally understand your elation in finding this community, it was that way for so many of us. It’s almost an inexplicable feeling that you just have to experience to understand.
Yay, we have another nurse, what I call a noble profession that takes a lot of patience and fortitude and is often under-appreciated.
I’m sorry for all the hardships you have had to go through in life due to this disease. You have definitely found the right place where we can empathize with those struggles and also give you comradery and hope that you can have a good life.
We look forward to your contributions and comfort. Even though we share this disease, we all live our unique lives. One thing that one person says on any given day could be exactly what another person needs to hear at that moment. The diversity, backgrounds, hardships and victories that we experience and share can be such a source of comfort and solidarity. Glad you made it to this sanctuary.
-Paul
Im also a registered nurse and has chronic hep b. I just got my RN license in the US and Canada… Are you currently practicing as an RN in Canada? I’m afraid to apply for work because I might get discriminated and hospitals won’t hire me…
Thank you both for sharing your stories and hope you contribute to the other threads of people with similar experiences (most relevant to you both here: Should I give up my nursing study? - #13 by cscoffin)
Cheers,
Thomas
Thank you Tom. To be frank this issue scares me almost out of my skin.but with your experience and sharing in our group,I get some hope.
We pray that God grants us a successful cure in the near future.
One very important Qn.Mr Thomas .
My wife tested negative for HBv and got her vaccinated thereafter. It it ok to continue having sexual contact without protection ? Given the viral load is somehow low? This gets me worried also for her safety and coz I have also a very young family.
Not sure whether my Qn may have be addressed before in this forum but I think it may be important you share with us your opinion
Otherwise I’m very grateful to be here
Dear @anonymous30,
This is raised a few times in the relationship and family threads. Your wife would be considered protected if her anti-HBs antibody levels are above 10 mIU/mL.
Thomas
Hi Mmalica
Welcome to the forum and I hope you will get the support you need. Some of of us have tasted the bitter side of hepb (HCC)and are strong and have no worries to write home about.
It’s said life is unfair, whatever it throws your way, pick it and learn to use it for your benefit or learn to cope with it. You cannot afford to agonize the whole of you life with things you cannot change… St. Francis of Assisi has that popular prayer “prayer
of serenity” . it’s not only a prayer but encourage words. Hope you know it.
Kinoti
Hi Mmaylica,
As many of my colleagues have said already you are welcome on here. I do not think you are alone feeling that way or having your career choice (s) affected by this disease. Many of us have dealt with it too, but we do not have to remain silent any longer. By speaking and sharing our experiences we are freeing ourselves and also breaking the taboo about hepatitis B. I hope you continue to find support and enjoy this community where many of us are patients too. Be free to join conversations and share your experiences, no judgments. Welcome once again. Bright (bansah1).
Hi Thomas and fellow forum:) I’m not sure how to post on here so I’m just replying. I just took my first Vemlidy and am very anxious. I was diagnosed 10 years ago, but have probably had it much longer. I love my doc at the Mayo Clinic and he said it’s time so I started. Just wanted to reach out and thank you all for all the personal stories and discussions on here, it makes me feel less alone and hopeful to see that so many are living and thriving dispute this disease.
Hi @Twinkle,
Welcome to the community! We’re glad you found your way here and as you have read, most people living with chronic hepatitis B can take a pill a day and live a functional and fulfilling life. Keep taking a look around the forum, it has a lot to offer. We also look forward to hearing more from you in the future.
-Paul
Maybe try applying in clinics where they will be happy to have your expertise and not focus on your status. Best wishes.
Hi, I am new here, too, and I also cannot figure out how to post so I will follow your example and reply as well. I am Kim from New York. I have had an odd start to my journey and I am relieved to find this forum so that I may learn, share and offer support. I had a talk with my Primary Care Physician yesterday and it has opened a very large door for me. I was recently discussing a difficult skin condition with her and she expressed frustration that I sometimes fail to follow up with Doctors. I pointed out to her that they are all rude and dismissive to me and always tell me they cannot help me and that I need to see a psychiatrist. I explained that I had no idea why doctors who had only seen for me for five minutes would consistently say this to me, so I just stopped going to doctors. I told her I was only seeing her because I was desperate to get some help with this skin condition. She said she wanted to follow up on something and had me come in to take blood. When I met with her for the results yesterday she pointed out that she had run a Heb B panel and told me I was positive for Hep B. She said this was a core antigen positive and explained that meant that I had been exposed to the virus. I told her that I had had a similar conversation with another doctor 30 years ago after I had asked about the vaccine and had not heard a word about it since. As I ruminated over our conversation later that day I realized she was trying to offer me a reason as to why the doctors are are so rude to me. I realized they just automatically assume that I have been a substance abuser and will ask them for opioids. This is not the case, but I doubt anyone will ever get that far in a conversation with me. I went home after that last appointment and started educating myself as much as I could reasonably expect to do so on the internet. I found The Hepatitis Foundation in Philly and a link to this group. The Foundation also had a list of good hepatologists in my area so I have arranged to have an appointment. I feel this is a good start. Thank you all for being here for me! I have so much to ask! For one, I had no idea I should have been monitoring my liver for these last thirty years…… it seems there is a lot I have been unaware of. Thirty years ago the doctor did tell me I cannot donate blood, but that is about it. I had no idea I needed to be talking to partners about this! Fortunately I have utilized safe sex practices over the years (apparently I was protecting them more than myself) and so my partners were safe in my ignorance. I have a suspicion as to how and when I was exposed to the virus, it would have been about 35 years ago and involved a domestic parter who was not honest with me about a lot of his activities. Regardless, now I have to learn how to navigate the medical community and the stigmas surrounding this status. I am stunned to find myself in a small group of shunned people with infectious diseases… I never knew this was such a big deal. I am dizzy from reading all of the bloodwork up details I will have to follow…I have lots to learn and many questions and I am grateful to have all of you to support me. I am sorry that you are all in this select group with me, but we have each other and that counts for something.
Hi @Elkile,
I am really glad that you found The Hep B Foundation and that lead you to this community. Many here have dealt with some form or another of stigma due to this disease. It’s funny how you can go to the doctor for one thing and then find out you have something else. I feel bad that you had so many frustrating experiences over the years with multiple doctors. I think the medical community is much more informed today than previous decades about Hep B and know that more times than not, patients are infected from birth or other reasons than just intravenous drug use. It was a blessing in disguise though that you went to get checked for other reasons and received this diagnosis because it’s better that you know and you can monitor the condition and get treatment if necessary.
Take a look around the forums. There is a lot of information to glean and if you have questions, our experts will do their best to answer them. You can lean on this community because we all are in the same boat and can understand with empathy. Keep us updated and let us know how things are going when you have updates. Again, welcome to the community!
-Paul
Hi Elkile
Thanks for your long thread that gives the reader a deep understanding of who you are, your experience with medical professionals, your help b condition and your statue in public relation. Am wondering if this is a general experience for people with hepb infection in your area or unique to you.
Welcome to hepb community, read alot and evaluate you personal interaction with your doctor for optimal treatment plan.
Kinoti
Dear @Elkile,
I’d like to join my colleagues in welcoming you to the forum and thank you for sharing your story.
We know that stigma and discrimination across the medical profession is letting a lot of people down and stopping people from accessing appropriate care. There are indeed committed heroes that are in the health care system, but some sectors have a lot to improve. I’m glad that you were able to find a way forward and have an appointment with a specialist.
I hope you find this community useful and please keep us up to date on your progress!
Thomas
Hello Everyone!
I hope you are all doing well.
I am Pradeep Malik, a hepatitis B carrier and on an antiviral treatment since 2017. I am in North Carolina, US.
Thanks for letting me join this group. I am hoping to learn, share my experience and try my best to stay strong.
Cheers,
Pradeep Malik
Hi guys! I currently live in The Netherlands and a chronic Hep B carrier since childhood (now reaching my 40s). I’ve chosen to remain silent about my condition (apart from family and medical professionals) because of the perceived stigma. Last month I have started treatment with entecavir (after years of reluctance to leave it alone). Is anyone using the same drug? This forum is a really great idea. Greetings
Hi @Titobissau ,
Welcome to the community! You will read on here that many and maybe most people deal with the stigma of Hep B. There are at least a few threads on the forum about it and some advice and stories from other members that have or do deal with it.
The 3 main antiviral treatment medications are Entecavir, TDF and TAF (Tenofovir); in that order of oldest to newest release. That would be an interesting question, what percentage of the CHB population uses each and how has that statistic trended from year to year.
As you read more of the posts and threads within this community, you will quickly learn that Thomas Tu is the founder of this great community and you will also learn about the other experts that dedicate their time and effort towards this cause.
Welcome again,
-Paul
Hi Titobissau
Welcome to hepb community where like minded people live for one another.
Your feelings are not unique to you but to almost every body after discovering their hepb condition. With time and sharing all bad feelings fade and we become resistant to stigma and we become educators.
Kinoti
I am so sorry that you lost your parents. How old were they. Pls don’t feel obligated to respond. Did they know about their HBV status?