How are you doing?: What it means to live with HBV

Hi everyone. I hope this is allowed. Thought I’d try something different with a discussion thread that focuses on how we are doing in our daily lives in real time living with HBV and its impact on our mind, body, and spirit. Consider using this thread just to check-in to share how you’re doing, how you’re feeling, and how you are taking care of yourself. Hopefully we can learn from each other. Thank you.

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Hi

Hope you are doing good. It really impact physically, mentally and financially. I was diagnosed 8 moths ago. I was crying because it was impacting on physical. I lost significant weight. I am having yellow eyes. Symptoms reduced after starting medication. I stopped losing weight. I haven’t gained weight yet. I am trying. I have reveled my status in close circle. I didn’t faced any discrimination yet. I am awaiting my blood follow-up report. I will get it know in couple of days about it. Somehow I managed to live with it but I started facing another health problem. I life is not easy as it looks. It is struggle.

Thank you.

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@HopeForCure,

Thank you for sharing and for your honesty. I feel and hear your pain, anger, frustration, and fear. All are real and legitimate. I am glad to also hear that medicine appears to be having some positive impact on you physically. I wish and pray for your continued improvement.

I was diagnosed March 2021 after doing something good: donating blood which led to this shocking and scary diagnosis. Since that time, although doctors tell me I am fine, my mind, body, and eyes are playing tricks on me in that I think I see and feel symptoms commonly associated with HepB.

Even now, I am still feeling this really weird sensation/pressure/discomfort/periodic mild sharpness around my chest, rotating throughout my back, just beneath my rib cage, and down my sternum. I am awaiting blood tests now. But my doctor detected no physical signs of problems.

In short, our stress is real because of the ongoing worry and fear of the unknown.

But I am so grateful for this forum and all the on-point and inspirational advice and insights from @ThomasTu, @Joan_Block , and @john.tavis. This forum and their advice have gotten me through these past 6 months with hope.

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I want to thank @hopefulone and @HopeForCure for your posts that are sincere and true. Even though I have “knowingly” been living with hep b for more than 32 years (i.e. I was diagnosed when I was almost 30), I will never forget when and how I was told that I had this liver disease, and how the first year I lived in terror that I was going to die before seeing my children grow up. My fear and anxiety has subsided somewhat since I’ve been taking antivirals for more than 15 years, which has kept my viral load undetectable. Yet, I still feel a twinge of fear when I see my doctor every six months for blood tests and ultrasounds. Liver cancer is always in the back of my mind. Fortunately I don’t have any pain, yet in reference to what @hopefulone wrote about, I’ve heard about the kind of pain you describe from many patients at the patient conferences that the Hepatitis B Foundation used to host; unfortunately, doctors can never explain or identify the source of pain and patients are left to just endure it. So yes, there are a lot of unanswered questions which can increase one’s anxiety and distress. Having hepbcommunity.org is very helpful and affirming to hear other’s people’s experiences to know that we’re not alone (or crazy)!!! Always, Joan

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Hi there, please tell, before you was diagnosed 8 month ago, do you remember when it started all simptoms? Can you tell us which was you lifestyle before the simptomes apperead? Maybe you didn’ t practice an healthy food style or you abused by some drugs or poor nutrition…or maybe you worked in a toxic envirenment…there are a lot of factor which could led to liver sever inflamation! Tell us your life experience! An I personally as hepatitis B chronic patient, I advice you to demand to the doctors to prove the existance of the B virus particles from an appropriate virus purification and isolation directly from your blood, not on cells culturs, and they to show you the particle on electron microscope!!! If they refuse to you this requirement or they say to you it is too expensive, then you will find at least they try to hide you the real cause of you liver inflamation! If now you better after the viral treatment it is not a proof that you have a virus in you!!! Think with your own minde! If you had a bad life style, then renounce to it, and live a heathy life! God bless you and enlight the doctor to tell the truth!

I’m so confused if your inactive how fast can that change? an what’s the percentage risk of getting cancer , fibrosis , cirrhosis? I heard when you start getting in to your fifty’s things can start to change alot from there. some say also you might stay inactive for life how well is the treatment if you have to treat it. I’m seeing no answer bout how long you can live in the long run of this when people are getting diagnosed an not living a long time that’s really scary thing to me I’m so confused?
If you have mild fatty liver an a low viral load HBeag negative an hbeab positive what would be good for these issues that are being said in the long run.

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Hi @Eddie,

The chance of cancer and fibrosis is quite low in people in the same phase as you (less than 0.5% per year).

The studies you mention for people over 50 counts people who are HBeAg-positive or have high viral load. These are the danger period for them, but also much of the risks can be controlled with medication and monitoring.

People under monitoring and management do much better than those without, so you are in a good road to live a long life if you continue this.

Hope this helps,
Thomas

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Thanks for the reply Im so stressed out about this everyday lately I’ve been so worried any words of advice? I keep thinking ahead of myself it’s been exhausting

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Hi Eddie, I want to echo that Thomas said above about the importance of seeing a knowledgeable doctor who understands hep b and its management, as well the treatment options. Getting regular check-ups (at least once a year if not every 6 months) will help identify any problems early on. And if your medical situation is such that treatment could be helpful, then the currently approved drugs are very helpful in keeping your viral load down to undetectable, which decreases the amount of inflammation in your liver (the less virus, the less inflammation=less damage). Since I’m not sure of your age or where you live, then drug therapy may or may not be easily available or recommended? Thanks and please know know that the hepbcommunity.org is here to help us all stay calm and live successfully with hep b! Always, Joan

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Thanx Joan I’m very scared not having or understanding this situation in my life I’m 41 years of age I just found out I live in Sacramento ca I have a appt but it’s not till next week

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Hi Eddie, the good news is that you live in a state with many excellent doctors who know about hep b. And you’re relatively young, so should expect to live a long, healthy life! Many of us on this forum went through exactly what you’re experiencing when we first found out. I was diagnosed in the late 1980’s when there were no treatments or even awareness about hep b. I was terrified! Today there are really good drugs to control/manage hep b and better technologies to monitor for the early detection of cirrhosis or liver cancer, so the outlook and prognosis for hep b is significantly better than 30 years ago. However, we definitely understand the fear, anxiety and confusion around being newly diagnosed. Rest assured, however, that you really can live successfully with hep b and really should expect to live a long and healthy life!! Always, Joan

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Hey @Joan_Block, I was missing your posts lately. Maybe you took a break from the community. Great to see you writing again :slight_smile: :slight_smile:

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I’ll talk to my G.I. nurse practitioner today and she told me that everything looks good so far my ultrasound came out no cancer no cirrhosis but she didn’t really get into to detail like you do with me It hit me in the chest is when she said that we have to monitor Every six months because cancer could hit you at any time

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Hello everybody,
Hope everyone is doing great. As many I was diagnosed when I donated blood. I was buffled by my diagnosis as I could not figure out how I got it.I am still trying to understand that. My guess is the dentist.

My main issue with HBV so far is my anxiety. Not knowing how I got it makes me worried for simple things. If I get a small cut (which happens often cause I very clumsy lol) I get very stressed and worried. I get this insane fear that if I touch something it will get infected. I am kinda obsessed in cleaning things with bleach for that reason.

It’s funny but I often forget it’s been almost 9 years since I was diagnosed!

Once again, I feel the need to thank this wonderful community. I only found you a few months ago but I am extremely grateful.

Best Regards,
Drew

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Thanks CGNepal for noticing my absence! It’s not that I need a break - it’s that I’m often visiting my 1 year old grandson Henry who takes my 100% attention! So, I leave my laptop at home and just play with him. Always, Joan

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Dear Drew, thanks so much for sharing your experiences. Having spoken to so many folks who were newly diagnosed with hep b, I know that the first response is often, “How did I get this?” Since I was a nurse, I just assumed it was from a needle stick, so I never thought much about this question. But I totally understand people’s reactions. And you’re definitely not alone. Hopefully with your experience of living with hep b for the past 9 years, you can weigh in and help others struggling with a new diagnosis and wondering how they got infected.

I also want to respond to your anxiety about transmission with my favorite words of wisdom learned long ago from a doctor. Blood is a two-way street!! So many of us with hep b worry incessantly about potentially infecting others. But we can easily become infected by other people’s blood (and aerosolized Covid-19 droplets!) as well. With that said, it is good to be mindful about spilling or spreading our blood (or sharing items that could have blood on it like toothbrushes), but as you noted, to not get overly OCD about it.

Thanks again for sharing and hope we hear more from you!! Always, Joan

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Dear Eddie, I hear you! Liver cancer is always at the back of our minds since chronic hep b is one of the primary reasons for developing it. BUT, with good medical care, treatment if it’s recommended for you, and healthy living, we should all expect to avoid disease progression to liver cancer. Or at least, anything would be caught early with 6-month medical monitoring and earlier interventions could be made that would make a positive impact on treating the cancer. Thanks for sharing your fears and concerns. This is the place where you can receive the support and reassurance that a long and healthy life is truly possible with hep b!! Always, Joan

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Hi @Joan_Block Great to know you have a 1 year old grandson. We were blessed with a baby an year ago and we named him after his great grandmother. I forget everything about HepB when I spend time with Param. It is a kind of therapy. :slight_smile:

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@Eddie

Congratulations on your results! We have to do our part: eat healthy, exercise, live healthy, and continue with monitoring.

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Hi everyone.

Dear @Drew_rous, I was diagnosed in March 2021 after donating blood. I am 51. I then spent that entire weekend stressed, angry, demanding answers from God, questioning myself, praying, not eating, sleeping a lot, worrying, and googling a lot of information which just made things worse and more stressful. Did I do something to deserve this? Was it pre-marriage? Was it post-marriage? I even thought briefly – very briefly – about just leaving my wife to give her peace of mind and even questioning if I wanted to live. I was just scared.

Thankfully, after talking through and eliminating risk factors, my doctor and GI said I was okay and likely contracted at birth or even by a simple graze. This made be feel less guilty that I did something wrong to deserve this condition. Tests results seem to give my GI a bit more confidence in the vertical transmission at birth theory.

In my 51 years, I have not had any symptoms associated with liver damage. So I thank God for that blessing. I thank God that I decided to give blood which led to this diagnosis now rather than later. My maternal grandmother died from liver cancer we believe, so I wonder if she had HBV or if it was from something else. I will never know.

This community GOT ME THROUGH A LOT OF DARK DAYS AND GAVE ME SO MUCH HOPE! I hope we can use this discussion thread to talk to each other and encourage each other by sharing what we are dealing with in case some patterns emerge.

My situation right now: I have a new primary because I moved. I passed the physical “touch and listen” test because nothing abnormal was felt or heard during the exam. Now, I am waiting for urine and blood test results. In January, I take my 6 month ultrasound check-up.

I am a little worried right now because I “feel funny” around the chest, back, and right underneath the rib cage and sternum. Doctor said I have tight muscles in my back that’s causing backaches and discomfort in other parts of my body. But I will feel better after the blood work. @Joan_Block mentioned these sensations appear to be common among others but not sure why.

Stay encouraged.

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