Hi everyone,
I have been on this forum for a while since my husband found out about his status in 2020. It’s been very helpful to learn about various situations in the affected community. For my husband, the transmission happened from his mother and he did not know until he was in his mid-40s. Since then, we have been on Pegasys treatment in the first year. After failure, we started tenofovir. Now, the virus has become undetectable. His liver was F3 when we first found out. There were some fears of portal hypertension last year. But the viral load is undetectable as of last month. Now, the status still affects his mental health very heavily. I do not know how to support. I needed mental health support myself in the first few years but beign a very analytical person, I did a lot of research and since I am affected by it but not as much as him, I can distance myself and be very rational about it. I can see, however, that for him it is very difficult to rationalize it. He is doing pretty well overall, but sometimes I see him being very sad and I would like to somehow provide him better support. But I don’t know what helps. Would you suggest any resources for me to learn more about how HBV affects mental health and what are best practices for spouses to support our loved ones in a safe way. I am realizing that I am quite incapable of this and it seems like a big task. Thanks so much ahead of time!
My firm thinking/values are: “Turn bad things into/see good things.” I am an “inactive hepatitis B surface antigen carrier.” I think this may be a kind of long-term protection from God, which will bring me some benefits in the future stage of my life.
I think the change in thinking is crucial to people’s impact. I believe that in the future, when you feel desperate, you can still believe in tomorrow’s sunshine, fresh air, warm wind, and the sweetness of cabbage, which are the most basic/most important. Then you can try to believe that the continued progress of AI will help to completely cure hepatitis B. Finally, let’s boldly imagine that a new virus will appear in the world in the future, and the new virus and hepatitis B virus will produce an immune response, resulting in the eradication of both viruses (many unknown viruses are hidden in the glaciers of the Qinghai-Tibet Plateau in China).
I just found out myself at 35 years old on January 19 after trying to donate plasma for the first time - just recently the ban had been lifted for individuals living in Germany during mad cow disease years (I was born there to military parents). Once again I am banned for life but that was the least of my worries…
My mother is an inactive carrier. She found out when she was pregnant with me and even though I was given the vaccine shots shortly after birth, I had already been infected. I am a bit upset that there was never a confirmation since then on whether it was successful… I have never had any symptoms and my blood work has been within range for as long as I know.
I was devastated and depressed the first week of finding out. Mainly due to fear of significant liver damage being coupled with a bad habit of drinking beers most nights of the week for the past 10 years. Although my ALT has been mildly elevated (57 in 2021, May 2024 it was 41, and just recently it was 41), I have always attributed it to being slightly over weight (235 at 5’11") and moderate amounts of beers a week. My AST has been about 23 each of those times. Platelet count was 263 a couple weeks ago and all other liver results are in the middle range.
But since, I have been able to lift my spirits with hope that becoming healthier and quitting drinking, that I believe I can give myself and liver a fighting chance. I am hopeful that following a healthy lifestyle from now on that I can still live a long, full life.
May I ask how your husband found out?
Thanks, It was also quite unexpected. He found out during a minor operation he had to undergo. I hope you get better. My husband also used to drink when he was younger. It was especially devastating for him because at the time when he had the minor operation, he was very healthy and into sports, stopped drinking and smoking, and eating really healthy. He is in a really good shape now. But still his spirits go up and down and he gets very triggered by certain discussions that in a family we should be able to discuss.
Thank you! I think he has a smilar coping mechanism. But it’s not always easy. And sometimes it just becomes quite overwhelming for him.
Hi @Mkei,
Welcome to the community and thanks for sharing your experience with us all. It can be challenging trying to help. It might be helpful at times and not at others, which is all you can do. I understand your concern for your husband, and he will need all the support he can get as he processes all this. His reactions seem normal. Him being angry or avoiding conversations is a mechanism to say either I am not ready to talk right now or I want to be left alone. You are left to read in between the tea leaves which can be hard to do.
A few things that could help: Silence is a good thing, give him the space he needs. Let him know you will be there whenever he needs to talk.
Maybe avoid those conversations that trigger him to shut down or lead to him not wanting to talk. As patients we are learning all the time about this disease that we have so we might not have all the answers to questions others may hope we could answer.
If this begins to affect his activities of daily living, his relationship, work, etc. then he might need to talk to someone.
Also consider how to frame what you ask him. For example, rather than asking what is wrong with him or happening? You can say I observe you are a bit quiet today, is there anything you want to talk about? It is common we patients will say something like “You don’t understand because you are not the one living with the disease”. This can get a lot of different responses. The best response is to take a deep breath first, then say "Yes, you are right that I don’t understand how it feels to live with HBV. But can you please help me understand it? All these might seem small but they could be helpful. Arguing is the worst action in this situation, it will push him away. Let him know you are there and how much you care and worry about him.
It can be stressful, so don’t forget to take care of yourself. It is very important. You can encourage him to find something he is passionate about and focus on when he begins to feel that way. It could be listening to a favorite music, gardening, going for a walk, watching a funny movie, etc. something that will help him take his mind off HBV. Even if it is for a second. It helps
In my experience, knowing and understanding the disease did help me. I understood what I could do to improve my chances of living with this disease. I also understand that nothing is guaranteed in life, so I am also realistic. It helped with my anxiety and thinking a lot. I practice positive thinking, where I try to see something good in any circumstance. I cherish, enjoy, celebrate, and feel grateful all the time for the small things. This is something we can all benefit from. Life is hard as it is and we cannot dwell on the bad things all the time. We must be kind to ourselves. I saw this somewhere the other day and I think it makes sense. It said, “You have one liver, take care of it”. This is true to our lives as well that we have one life, and we must enjoy it in the best ways we can. We have to try and remain optimistic and live our lives.
I hope you find this and what others have shared helpful. There are no concrete solutions, try as many things that will help with your situation as long as you both are on the same page so it does not create any tension. I apologize for writing this long message. Keep us posted. Best, Bansah1
Good Morning All. I was here last year when my hbsag result came back positive September 13, 2024. I took livolin drug for just 1month though I was not consistent with it. Did my scan last year and it showed inflammation by 7.8cm. This year Feb, I met with to the lab and the CT SCAN result showed normal liver size.
I decided to visit a new hospital where the doctor conducted CT scan and it showed normal size with no inflammation.
He asked me to go to lab to do hep b panel test and the result of the panel test came back negative.
I was asked to go to the hospital lab to do another test and it came back negative.
I decided to go another lab myself to do hep b test and it came back non reactive.
Hi @Tye,
Thanks for sharing these results. They all show you do not have hepatitis B and neither do you have immunity or protection against it. Please get vaccinated as soon as possible to get the protection you need against HBV. Best, Bansah1.
Thank you .
I wanted to share it with this community because when I got to know last year it was this community that gave me strength. It was just so unreal because I did test and it was positive and dna showed 3<10iu/ml then.
Indeed God is great.
I pray and hope everyone on this chapter comes out strong.
Thank you.
That’s so kind of you. Thank for your prayers and updates. Appreciated, Bansah1