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

General Discussion
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Hi @Thomas, @availlant, (and others):

  1. What causes “inactive carrier” status? Is it luck, treatment, other factors?

  2. Just curious: I have suddenly become keenly aware that every medicine commercial on TV mentions the HepB warning. Is there something that’s driving these warnings?

  3. I am also more keenly aware of commercials promoting HIV medications. I even saw one commercial specifically for HepC. Any insights on why we do not see commercials promoting HBV medications?

  4. I listened to your recorded interview regarding your research and lived experience with HBV. I really enjoyed it. I appreciate the positive messages you promoted. I also understand the fear that we live with regarding not knowing when our liver will be impacted by the big “C” word.

  5. Finally, I’m getting mixed messages from different doctors. I recently read in my medical notes that I have a “diagnosed HBV liver disease.” But then my last doctor told me a month ago that I “do not” have a liver disease and that “I have a disease that could cause liver disease.” Any insights on this distinction?

In closing, I am making sure I’m getting all the immunizations that I’m eligible for: Shingles, Tetanus, Flu, Covid, Pnuemonia, HepA. I’m not taking any changes unnecessarily (LOL).

Thank you and stay hopeful.

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Dear @hopefulone,

Thanks for your very insightful questions. I will try to answer as best as I can:

  1. “Inactive carrier” status is a term that describes the third stage in this cartoon (Hepatitis B Virus 101 with Dr. Thomas Tu - YouTube). I describe it as the immune system’s success in clearing most of the cells that are infected with Hepatitis B. We don’t exactly know what drives this state, other than the immune system becoming active. This may be achievable by upcoming drugs that stimulate the immune system, but this has not been tested widely yet.

  2. This might be a US thing, as we don’t really have medicine commercials here. It would be interesting hear the US perspectives on this (@john.tavis any thoughts?)

  3. As above

  4. Thank you, I appreciate your kind words.

  5. Yes, these are two different senses of the word “disease”. The first sense is that there is something infecting your body that has the potential to cause harm (you have this); the second sense is the active symptomatic harm being done to your body at the moment (you may not have this if you are in inactive carrier phase).

Hope this helps,
Thomas

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Hi @hopefulone,

Thomas did a great job answering the other questions, so I’ll limit my reply to answering your questions about medical commercials. I’m presuming you are in the USA.

One of the liver’s big jobs is “detoxifying xenobiotics”, which is a fancy way to say it breaks down things that should not be in the body, like toxins in food. From the liver’s point of view, drugs are “xenobiotics”, so it is a dominant site of removal of drugs from the body. The dosages for drugs are carefully calibrated to have the right amount of drug to do the job they need to do, so the amount of a drug in the body and how long it stays there can be changed for drugs that are metabolized in the liver if the liver is damaged and is not breaking down the drugs at its normal rate. Also, a damaged liver can itself become more sensitive to potential toxic side effects from breakdown of drugs. Therefore, a very large number of drugs carry warnings to be careful when prescribing them to people with chronic liver diseases such as hepatitis B.

As to the lack of commercials for HBV drugs: For reasons that I don’t understand fully (and that make me very angry), HBV is almost an invisible disease in many parts of the world, America included. It just gets overlooked in marketing, health education of the general population, and even sometimes in education/training of healthcare providers. Organizations such as the Hepatitis B Foundation, ICE-HBV, HepB Community, and many others are working to raise the profile of HBV+ folks so that they get the information and care they need.

I hope this helps.

John.

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Hi @john.tavis,

Thank you so much for your response. I appreciate it and it makes sense. It’s just amazing that, psychologically, it seems like I am so much more sensitive now to the commercial warnings about the liver and HepB than I was before.

Thank you also for all you are doing in the HBV space to help and heal others.

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Hi all, today is my 6 months check up again. I’m really anxious going to the appointment and 6 months went by fast. Every time going to the check up stir up all the emotional feeling again. I hope there will be a cure soon for all of us.

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Dear @Olive,

Wishing you all the strength with this. Hope everything is well and you keep us updated on your status.

Thomas

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Hello Everyone,

I was diagnosed Chronic Hepb during Nov’22 when I had to undergo angioplasty. Ever since I am continuously under stress and have not been able to live comfortably. Whole day I keep on thinking about the same and possible impact it may have and how do I live. As much as I want these thoughts to go away from my mind, they seem to keep coming again and again. As a result, i continuously have headache throughout the day. I have lost interests in the things that I enjoyed doing earlier. My productivity at work also have reduced. Whole of my family is supporting me each day but I am not able to be the same person before diagnosis.
Has someone been through similar situation and how have you been able to come out of the same.

Regards,

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Hi @rjktgj,

I am sorry to hear about your present situation. Getting a stent put into your heart must be quite worrisome. As to your HBV diagnosis, most if not all the members of this community go through an initial shock and possibly depression and anxiety. Most that end up with CHB learn over time that this disease is not a death sentence. Eventually, most discover that a once a day pill for treatment and every 6 month visit to the doctor for labs isn’t too harsh and that they can live a pretty normal life otherwise.

There are exceptions to the rule and there are some of us that have to deal with more complications. I encourage you to read the forums and you will see that even people that live with harsh complications, can still fight the good fight. Do a search within the forums for: kinoti. He has had to deal with a lot of hardship the past year or so and is an inspiration to us all with his fortitude and determination. Also, maybe @bansah1 can supplement this post with one of his own as he is very well versed with the emotional, physical and spiritual aspects of this disease and is a great resource of support.

I will finish with sharing this link to a video geared toward mental health and CHB that may inspire you further.

https://www.hepbcommunity.org/t/staff-learning-materials-resources/3911

-Paul

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Thanks Paul for your inputs.

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Hi @rjktgj,
I am sorry to hear about your situation. PuallyHBV has said a lot already and gave some great advice. After reading your post, it sounds like your life and work is being impacted due to your diagnosis. It is alright for people to go through a rough patch after diagnosis, but when it starts affecting your life and work, then one need to seek a professional help. My guess is that you are likely dealing with depression. We have all gone through what you are going through after our diagnosis. I like to compare it to the grief cycle, as we know that cycle is not straightforward. You have good days and bad days, but at some point you are able to adapt better. It took me about 3 years to get to the point where I peacefully accepted my diagnosis and live with it. I am still able to dream because I know my diagnosis is not a death sentence. I understand it could be scary and fearful, but remain hopeful.

Try and seek professional help if you can especially if your life and work is being affected. Talk to your family support system about your fears and concerns. It is hard, but trust me it gets better as time goes on. Don’t let the diagnosis hold you back, rather continue to dream big. You can live a healthy and long life with this disease, it will require continues monitoring. You can marry and have children without infecting them. There are antivirals which are one daily pills that can slow the progression of the disease and protect your liver. Please, do not lose hope as you still have many great years ahead. Right now it might seem really difficult, but this will pass. Many of us have been through what you are going through right now. I want you to know that you are not alone. We will support and encourage you through this process. Try and hold on tight as best as you can. Keep us all posted. Best, Bansah1

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Thanks Bansah for sharing your views…

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Hi @Olive,

I know exactly how you feel. The anxiety is real and may increase if there are other life or medical factors that could contribute to potential findings. I don’t have an answer but some suggestions that work for me:

  1. I am a person of faith, so I pray and I claim healing and medical victory over my HBV, high blood pressure, and other conditions.

  2. I take deep breaths and say a prayer before the tests. I try to get into the right mind space psychologically.

  3. I motivate myself by reminding myself that, whatever the news, it is often better to know the news than not know. This way, I control the situation and I take control over my actions which gives me some degree of self-empowerment.

I am grateful that, since my diagnosis in March 2021, I’ve received positive news. I pray the same for you.

I agree with @ThomasTu that you should stay engaged with us regarding what you’re going through so we can all support each other.

Best to you on this journey, but you are not alone.

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Hello @rjktgj,

Welcome to our community of survivors and fighters! I was diagnosed in March 2021, a few months before you. I learned by doing something good: donating blood at my university. I remember that weekend clearly. I was ANGRY! I was confused because I had no clue how this happened. All the suspicions in the world would never be definitive since, as I understand, minimal contact with some blood or fluid along the way somewhere in time COULD have been the culprit. Based on a variety of test results and other factors, my GI theorized that it was probably through vertical transmission (i.e., at birth); other doctors have tended to agree with the GI’s hypothesis.

I also questioned God that weekend about why this happened to me. I demanded answers and clarity. I took the next day off from work. I was at a complete loss on how to explain this to my wife (I ultimately waited six months after additional tests and improved knowledge to discuss with her).

Acknowledge and own your anger, fear, confusion, etc. They are real and need to be experienced so you can breakthrough them because, in the end, stress and worry will do us more harm than good.

Lastly, you might be interested in reading my earlier reply to @Olive.

Stay positive (something I work on constantly with intentionality). Stay connected to this community. Stay hopeful.

Stay connected with this community which has been INCREDIBLY HELPFUL to me.

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Hello @ThomasTu, @john.tavis, @Joan_Block, @PuallyHBV, @simone.strasser, @SS090711, and fellow HBV fighters and survivors:

I hope this message finds everyone in good spirits and positive thinking. I wanted to give an update on latest results: all good!

  1. Elastography results. I had an elastography done since the last ultrasound in February 2023 showed mild coarsening of the liver. Nothing was found! But there are some terms that I don’t quite understand and wonder if anyone can shed some light. For example:

RIGHT UPPER QUADRANT FINDINGS

Liver length: 15.9 cm
CBD: 0.34 cm

The visualized liver has a homogeneous echotexture. No focal masses.

IMPRESSION:

  1. No to mild fibrosis. Metavir Score F0/F1.

The liver stiffness value is 1.13 m/s (3.91 kPa) consistent with (no to mild fibrosis. 5% IQR/M. Liver stiffness values below 1.37 m/s (5.7 kPa) have a low likelihood of cirrhosis and may not require additional follow-up.

In the setting of (hepatic steatosis, eating, congestive heart failure, hepatic congestion, poor breathhold, etc.) the degree of liver fibrosis may be overestimated.

  1. Future monitoring. My doctor is so pleased with whatever she is seeing that she suggests 1 yr ultrasound and testing instead of every six months. This worried me because I’m still an HBV newbie. I got her to agree to do one more 6 month testing and ultrasound before deciding and she agreed. @ThomasTu, @simone.strasser, and @john.tavis, what are your thoughts about this?

  2. Stay the course. My doctor said that I should keep doing whatever I’m doing, so I wanted to share with the community some of what I do to maintain good health in case it’s helpful to others:

. Transitioning to mostly plant-based/vegetarian diet. I have no dietary restrictions but Dr. encouraged me to consume more fish, nuts, and olive oil.
. limit “guilty pleasure eating” to rare occasions. A recent wonderful life change has resulted in a bit more guilty pleasure eating though (I earned it!).
. started consuming at least 1 tablespoon of extra virgin olive oil. May increase to 2 or 3 tablespoons daily.
. drink A LOT of grapefruit juice and eat a lot of grapefruits. Love this stuff!
. drink a lot of lemon juice, lemon water, lemon tea with ginger. I also eat the lemon pulp!
. eat A LOT of blueberries and blackberries
. juicing celery, carrots, fruits
. HUGE reduction in sugar, soda, meat (never really drank alcohol)
. take organic certified 7500 mg Milk Thistle capsules 2x a day - got it on regular delivery from Amazon
. take Elderberry syrup 2x a day – got it on regular delivery from Amazon
. take Elderberry vitamin c powder packs a few times a week.
. started drinking coffee, mostly black coffee with stevia and sometimes zero sugar creamer
. blood pressure is now stable
. getting back into exercise routine aiming for 185 weight goal (at 211 today)

  1. Nagging upper right quadrant discomfort. No explanations for it. Abdomen X ray did not reveal anything other than moderate fecal matter in colon so now I take Miralax and it helps. Elastography did not reveal any issues in that area. It remains a mystery!

  2. New health conditions?

. I have vitamin D deficiency which is common in Midwest so Dr. put me (and the Mrs) on vitamins.
. My abdomen discomfort could be caused by mild irritable bowel syndrome.

I know this is a lot of info, but I hope someone finds my lived experiences helpful and hopeful. Hope others will share as well.

Best to everyone.

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Hi @hopefulone!

This is such great news. I am very happy to read your results. This must have been a huge relief for you and your family especially after your concerns with coarsening in the previous ultrasound. I will not be able to shed any extra light on the results apart from the fact that they look really good to me. I will leave that to the learned members. Thankyou for updating us and also thanks a lot for sharing your diet. I will implement some of them in my husband’s diet. Good luck with your weight reduction goal. I am sure you will achieve it by year-end(maybe even earlier)! Stay happy, healthy and positive. My husband’s bi-yearly tests are next week. Praying for good results too!

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Hi @hopefulone,

I’ll also leave your questions to the experts. However, I am so happy for your results. You are such a breath of fresh air, even when it’s not about good results. You’re such a great addition to this community and I am so glad that you are a part. I look forward to your posts, good news or even not so good news. You always bring hope and just your personality is an inspiration.

-Paul

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Dear @hopefulone,

I will join the others in congratulating you on these great results, showing that there is limited to no fibrosis. And you sound like you’re really taking charge of your life by implementing all of these lifestyle changes!

One thing to note is that it’d be important to mention to your pharmacist and doctor about the grapefruit consumption. By itself, they’re fine, but there are certain medications that can interact poorly with grapefruit (some @PharmacyExperts can probably give a good explanation here) and you may not think about it when chatting with your doctor.

Cheers,
Thomas

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Hi @hopefulone ,

@ThomasTu, you amaze with how much you know and that you willingly share. I wish my hepatologist would offer more free advice.

Yes, it is true that some medications oddly cannot be administered near time grapefruit/ grapefruit juice are consumed. One example are the cholesterol lowering meds such as the “statins” such as atorvastatin (Lipitor) and simvastatin (Zocor).
From FDA website:
With most drugs that are affected by grapefruit juice, “the juice lets more of the drug enter the blood,” says Shiew Mei Huang, Ph.D., of the FDA. “When there is too much drug in the blood, you may have more side effects.”

For example, if you drink a lot of grapefruit juice while taking certain statin drugs to lower cholesterol, too much of the drug may stay in your body, increasing your risk for liver and muscle damage that can lead to kidney failure.

Many drugs are broken down (metabolized) with the help of a vital enzyme called CYP3A4 in the small intestine. Grapefruit juice can block the action of intestinal CYP3A4, so instead of being metabolized, more of the drug enters the blood and stays in the body longer. The result: too much drug in your body.

This website has video which I will include in case anyone is interested.
Grapefruit Juice and Some Drugs Don't Mix | FDA.

Sorry for this delayed response. I have not been active this year as someone in US the last year of high school/preparing for college is a really chaotic and hectic time for not only the student but the parents :stuck_out_tongue_winking_eye:

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Thanks so much for your kind words and expertise, @hope4us. Glad I wasn’t just misremembering!

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Hello i am a noobie on this forum.

I really enjoy reading every one poste, and i find a part of my history and day to day life in every one of u.
I turn a litle in circle and read some poste multiple times but i will figure it out sonner than later.

I never spoke with any one about this except with my wife wich is verry suportiv.

I think ia very helpful for me to open up with my story and share somme insights and give hope to others and lerning from my mistakes.

I he

I was diagnosticate when i had 14 years old.
I was hospitalised 2 wekes for hep A acute infection and they discover hep b chronique carrier.
The doctor was verry warm and kinde and i was verry assure about litle to non complication.
My mother and father did not get tested and the subject was tabu in my fam ( my brother has it to … but we dont speek)
I had 1 year of eating helthy for the liver and no alchool.
I never have problem et did not enjoyed alchool but i had abuse ( bidge drinking when party).
I began smoking at an early age 12 yers i thing ( i recetly stop)
To make the story short because is very very long.
I live in denial a happy live with litle to no worries.
Smoking, eating verry bad … et take a lot of paracetamol and AINS for migrene. I abuse of paracetamol ( the migren seems to stop in the last 6 months … and litle to no parcetamol use )
A lot of disconfort in the right uper quadrand ( when stres and thinking of the virus i told my self maybe is psyvchological)

Now i am ful awake ( i hope) and ready to fight.

My recents blood works are generaly good
F0 maybe F1 fibrose
Hepatic markers and tumoral in normal range
The hbv adn and hbsag load a litle bit high … starting to consider ttt.

This forum is a bles and i really hope i can help others also.

A tres bientôt!

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