I acknowledge Hepatitis B has strongly shaped my character, risk appetite approach for life and partly formed the person of growth I am today. A balance of some good qualities and some I want to change.
Even more so, I realise there was a part of myself I never really loved all these years. I need to accept her and forgive her: that it was not her fault she contracted the virus as a defenceless child; neither was it her parent’s fault; she did not know how to ask or navigate questions on Hepatitis B and sex; nor was there enough resources on the internet 17 years ago.
Only recently, outside of immediate family I’ve told more close long term friends about my Hepatitis B status. It has helped normalise ‘acceptance’ that people can care about you just as you are. It gave me more confidence in publishing my story here.
Also practising dialogue will make it easier one day to share with a future partner about Hepatitis B and not be as concerned on the outcome of potential rejection.
What I do know about the Joanne of the future, is she is bolder, more capable, caring and will not let this virus dictate anymore.
By recognising it, the internal belief has transformed from: ‘Joanne will hurt someone and will be rejected. It’s private, continue to carry this burden and isolate so you won’t get hurt’
To now slowly reminding myself and believing…
‘Joanne has a medical condition, which is the same as another 257million globally that do not talk about it or do not know yet.
Whilst there is no cure for Hepatitis B yet, there’s immunity and treatment available, unlike many other medical conditions which have no known solution.
The more I love my own flaws and courageous qualities, one day someone special will love and accept me too.’
Dear Joanne what you wrote above is truly beautiful. It should be memorialized somehow! The truth you speak is what we all need to hear and be constantly reminded of. Please share these same thoughts when you see new people joining the forum. Even now after 30 years of knowing I have hep b, I really appreciate the wisdom in your words, which are so inspiring. Thank you!! Always, Joan
P.S. I love the photo of your bunny. So sorry you have to give him/her up!
Thank you @Joan_Block I will try, and perhaps one day meet new friends virtually on the same journey - so you really know you are not the only one with Hepatitis B…
Hi, My name is Corina from Miami 43. I was diagnosed with chronic hepatitis B a month ago for accident and I was in shock because I never had symptoms.
I have 17 years marriage with a wonderful man and I have 2 kids and they are all negatives! Thanks God. But I don’t know what happened to me.
I am really scared with the information in the internet about the hepatitis. My Liver is perfect without damages and my virus is to low (<10 IU/ml) So no medication for now.
Only know my husband and my family because I worry about my friends reaction.
How you know, this virus is stigmatized and we don’t know too much about this. We don’t have information about it and I believe that the governments around the world do not campaign enough to inform the people about the risks and adults who have not been vaccinated. I have information now that I am looking for it but I came from a country where people have not been well informed about this.
Of course, in my process I am in the stage of assimilating it and not saying anything yet for fear of pointed out but I think of all those people who don’t have their families to overcome it.
I am glad to find this space for us, because we need to know than we are not alone.
I am praying everyday for you guys to find a cure.
Welcome to the forum and thanks for sharing your experiences with us. It’s great that you have discovered this before any liver damage and that your family are all fine.
You’re right about that people in general don’t know much about hep B and what it means. There’s a lot of presumptions out there and your decision to keep it private is quite understandable.
It indeed might take some time to be comfortable with the knowledge of your condition, but I hope that this forum and the community here can support you through your journey. You’re not alone and many of us have been in this same situation.
Wish you all the best and please stay in touch,
Thomas
Hi… Everybody…!
I am gabriel 29yrs from Tanzania, am so happy to be in this furum.
2011 i was diagnosed with HBV, while trying to donate my blood at school., i was a bit scury, stressed and unaware of the results/deases in general although a healthcare provider counselled me how to cope with it(life style) but there was no linkage to care.
So this encouraged me to dig down about the disease, and i found that i have never hospitalized with kind of sign and symptoms of Hep B,
Countrywise people are unaware of Hep B, so i ignored it.
Around sept 2020 i felt unusual abdominal discomfort to my right upper quadrant, it was like burning pain, so this alarted me about something bad going on to my liver, i decided to seek medical atention to nearby Health center and Doctor ordered this Lab test, HBsAg = strong positive, ASLT=42.43iu/l,ALT=65.42iu/l,ALP=146.0iu/l,Birilubin total=1.6mg/dl, Birilubin direct=1.10mg/dl and Abd Uss= normal.
So according to my lab results He concluded it is CHB and adviced me to start Antretroviral therapy (he prescribed me with TLD-tenofovil/lamivudine/dolutegravil ) for 3months.
During treatment, i felt severe pain and heavyness to the right side of my abdomen so after 3 months of treatment the medicine was untoleratabe i decided to quit medication although ASLT,ALT,BID,BIT was normal except ALP was 124iu/l.
Am here, i need your advice and help guys, infact i have to be in treament like now but there is no other choice of medication in my country except these fixed dose combination used in HIV which have proved intolerance to me. "sorry for my bad english"
GOD BLESS U ALL
Thanks for your story and sorry to hear about your difficult circumstances. I think this is something you will need to discuss with your doctor. If you have been recommended to take medication for your Hep B, it is worthwhile to maintain it so you have the best chance to prevent serious liver disease later.
It is important not to simply stop taking medication without talking to your doctor because this can lead to the hep B reactivating and could cause worse symptoms. There may be different formulations that they can prescribe to work around the side-effects that you are experiencing.
If you can get some additional monitoring of your condition (e.g. ultrasound), this would probably be useful in checking that your liver is in good condition and could give your doctor some information about if medication is required.
Dear Tran, if we could all find someone you like you who is accepting of hep b, supportive and learning as much as possible about the chronic infection of your partner in order to protect his current and future health. Wow!! With that said, you’re asking great questions. Some important questions to ask as you think about your partner’s situation:
(1) Does anyone else in his family have hep b?
(2) Has anyone in his family died of cirrhosis, liver cancer or liver failure that he knows of?
(3) Is he seeing a liver specialist (hepatologist) or a primary care doctor? If he has insurance that would cover seeing a specialist, that would be ideal.
(3) Has he had an ultrasound of his liver? Current medical guidelines for managing hep b here in the U.S> recommend an ultrasound at least once a year, if not every 6 months (this includes seeing a doctor every 6 months as well).
(5) He has elevated liver enzymes (ALT is 58), almost twice what’s considered normal, which reflects liver inflammation.
(6) Considering his age of 35 years, a specialist might consider treatment because of his elevated ALT and viral load is above 1,000. If there is any liver cancer in his family, then they would most certainly start treatment.
In regards to longevity, believe it or not most of us should expect to live a long life if we maintain our health (eat right, avoid alcohol/smoking, see our doctors every 6 months or at least once a year, start treatment if appropriate, exercise, etc.). The risk of premature death is related to family history of serious liver disease (which can be mitigated with treatment), co-morbidities such as fatty liver disease, and excessive alcohol consumption.
Hopefully none of these are issues for your partner. So I probably wrote too much and am hoping that I haven’t either scared or overwhelmed you. As a nurse myself, I tend to like a lot of information! Please be sure to ask any other questions for clarification. And I know others, including Thomas Tu, will have additional sage advice and insights to share. Thanks so much for posting!! Always, Joan
Welcome to the community, @Tran. Thanks for sharing your experiences and glad to hear about your continual support of your partner.
Indeed, as Joan mentioned, the ALTs are a bit high and could indicate liver inflammation. Whether antiviral treatment will reduce these levels will depend on what the cause is: fatty liver can also increase ALTs. It might be worth getting a liver ultrasound or fibroscan to check this out.
I don’t think dry eyes are something that happens particularly due to Hep B.
I think if managed properly, Hep B won’t significantly shorten a person’s life. There are studies showing that with clinical monitoring and long-term antiviral treatment when necessary, people’s risk of cancer and liver disease approach that of people without hep B. The antivirals we have available now are very effective in reducing liver disease progression and in many instances will reverse liver damage over a period of time.
TDF does have a very low risk of affecting the kidneys and bones (though, if this is caught early with monitoring, it is asymptomatic and reversible). There are also other drugs that will not affect the kidneys (ETV or TAF). They are all effective over long periods of time with very few instances reported of virus resistance if you keep taking them regularly.
Thank you so much Joan and Thomas for your responses! It really helped a lot. And Joan, I always love long, informative responses so you didn’t overwhelm me at all I really appreciate it.
To answer your questions: One of my partner’s sisters is an inactive HepB carrier, but there is no history of advanced liver diseases in his family that he knows of. He has been seeing a liver specialist, having blood work and ultrasound/Fibroscan done every 6 months. Mentioned above were his last results, and his last ultrasound was “normal” according to his doctor, with a little bit of fat on the liver. I am not sure why the doctor didn’t start him on treatment yet despite the ALT being 58 and DNA > 1000.
I have one more question though: without treatment, what can we do to help lower the ALT and maintain it within normal limits? And is fatty liver reversible with a healthier diet and more exercise? Thank you all again!
Hi Tran, thanks for asking your partner about his family history with hep b and liver disease. Hopefully his sister is also seeing a liver specialist even though she has “inactive” disease since there really is no such thing as “inactive” because the virus is always still creating inflammation in the liver, which could over time create more serious problems later on.
In regards to your partner’s elevated ALT’s the most immediate course of action would be to stop drinking and smoking. An occasional drink for a special occasion is OK, but certainly drinking on any regular basis or more than one is not OK. His elevated ALT’s could also be due to the “little bit” of fat on his liver, which is called “fatty liver.” Sounds like it’s probably mild right now, but again, over time things can worsen.
There has been a lot written about “fatty liver” and hep b on this forum since several of us, including me, are struggling with it. Many asians (I’m Korean American) have what’s called “lean” fatty liver disease in that we’re not overweight, pre-diabetic or type 2 diabetic. Here in the U.S. with more than 30% of Americans medically obese, there’s an epidemic of fatty liver disease!! But these folks are not only obese, they have high blood sugar, high BP, high cholesterol and triglycerides and of course, fat on their livers.
Ok so what can be done to prevent progression? The advice I’ve been given by my liver specialist (as have others) is to lose weight (yes, even I can stand to lose a few pounds!), eat a more “mediterranean diet” (lots of fruits, veggies, nuts, grains, legumes; eat more fish and avoid red meat), and exercise. I know the Vietnamese diet has a lot of fresh vegetables and fish so I guess one way to reduce calories is the amount of rice and meat?
I also forgot to ask whether you have been tested for hep b? You want to make sure that you have protective antibodies against the hep b virus, and if not, to certainly get vaccinated!! Thanks again for sharing your concerns… we all learn from each other! Always, Joan
Yes, my partner’s sister is also seeing a specialist on a regular basis, thankfully! And my partner is neither a drinker nor a smoker; maybe an occasional bottle of beer during family gatherings, but nothing more than that. So I think it has more to do with his diet/stress/sleep…maybe?
Thanks so much for your input on a healthy diet in order to prevent/slow down progression of fatty liver. We do try to eat more veggies, fruits, substitute white rice with red rice and add more fish into our diet; but sometimes, that is hard to keep up with considering how busy life can get That’s not an excuse though of course, we’ll put more effort into it.
Matter of fact, I don’t think I have been tested for Hep B. When I started nursing school they made all of us get the vaccine but they didn’t test us in advance to see if we have the virus or not. I will definitely go get tested soon. Again, thank you so much for your time and your information. They really helped me feel better and less anxious.
So glad Tran to that your partner basically leads a healthy life! And yes, do get tested. Very wise. Thanks again and keep us posted on your situation. Always, Joan
Hi I feel at home here, my name is Listowel and I’m from Ghana, west Africa. I’m in my early 30s and a nurse. I found out for first time of my hepb positive status in my first year of nursing school in 2012. Some of my colleagues had gone to get themselves vaccinated, upon their return a conversation about the disease was started in our hostel. There and then I realized I also needed to get vaccinated. I enquired about where I could get vaccinated and one friend directed me to a privately owned medical lab around our school. I didn’t know one needed to be tested before the jab, I heard that, hep b was largely transmitted through sexual intercourse and so I was confident that I didn’t have it because I had never been with a woman. To my utmost shock, the test returned reactive. I was advised to do LFT and see physician. I did but the physician told me I didn’t need any treatment and that I would be fine. There is so much stigma and superstition around hep b here, so I decided not to inform anyone about my status. I started having mild abdominal pains and loss of appetite from 2015 and these symptoms have worsened since then. I’ve been overburdened by this disease and I think of it everyday. My greatest fear is that I may never be able to get intimate due to the immense stigma here. Below is my viral load test results which I did in march, 2021.
.HB DNA COPIES: 1429322 cp/mL
• Hepatitis B virus DNA: >> 87421902 IU/mL <<
Please help me. I started with Tenofovir for over a month and got too weak. One physician recommended interferon alpha 2a to me. I’m nine weeks into the interferon injections. Am i doing the right thing?
Great to have you here and thanks for sharing your story with all of us. Yes, it is not well known, but the majority of people with Hep B actually have gotten it when they were kids or newborns. All it takes is a tiny scratch when you’re a child. It is also asymptomatic for many years, so you may not know when you were exposed.
I know it is difficult with the stigma in the community, but knowing these facts will help you be stronger in your own mind and be a bit more confident.
Regarding the antivirals, interferon can help and if that is working for you, then you should keep going and follow your doctor’s advice. The other option to consider is entecavir which is similar to tenofovir. It may be better in terms of side-effects for you.
As long as you’re staying under clinical monitoring, following medical advice, and checking on your liver health to adjust to any changes, I think you’re doing the right thing.
I will try, and perhaps one day meet new friends virtually on the same journey - so you really know you are not the only one with Hepatitis B…
That’s not an excuse though of course, we’ll put more effort into it.