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

I’m doing the same thing this stress is something I never felt I just found out too I’m 41 yro trying to adjust

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Hola a todos si me gustaría opinar también he Sido diagnosticado recientemente y el estrés los miedos son algo que nos hace sentir algo desanimados tengo 39 años pero tanto como Thomas , Paul y los demás compañeros y compañeras de este foro nos han contado como comenzaron el proceso lo más importante es el amor de tus seres queridos el tratamiento y seguimiento cada 6 meses o cuando el médico lo indique aunque también soy nuevo diagnosticado tengo fe que podemos llevar una vida normal y alcanzar nuestras metas yo me pongo a ver películas y estar con mi esposa y jugar con mi hija eso me ayuda mucho que hacen para distraerse y sentirse más tranquilos gracias a todos y todas muchas bendiciones esperemos que pronto la cura este lista

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I give you a lot of credit an blessing thank you an your right. It just seems we gotta learn to Except what’s going on so we can get back to our regular lives feeling normal again

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Es bueno imaginar y sentir que tenemos que regresar a una vida normal y llenarnos denuevo de fe y esperanza ánimo A todos este foro es grandioso para no sentirnos solos y aprender de los que tienen más experiencia con sus consejos y información nos ayudan a quitarnos el miedo gracias a todos Thomas , Paul , joan block ,Eddie saludos y bendiciones

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Hi hopefulone,

I think this was a great idea to start this thread. A topic where we can just talk about how we are feeling on any given day. The medical, physical, mental and emotional struggles can be significant at times, so it will be nice to have somewhere to share those struggles and maybe even vent and let off some steam here and there.

I think it will help so many people to know what others struggle with aside from all the technical and scientific aspects. Like “I am having a lot of pain below my rib cage today.” or “I just can’t seem to get on top of my fatigue lately.” Feeling solidarity in our daily struggles can have a positive effect even though it’s about a negative thing.

I just wanted to let you know that this was a great idea and I have yet to post on this topic till now because, I have been posting a lot lately and I didn’t want to inundate everyone with more of my issues. Although, this seems like a good place to do it.

Kudos!

-Paul

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As for me right now the last couple weeks the mornings are the hardest and being not able to just stop thinking about it in the back your head. towards the end of the day I’ll feel a little better I just want this stress to stop some how

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Hey there Eddie,

Hang in there buddy. Over time, things will become the new normal. You will see that you can still live life. Maybe try to add something to your morning routine. Is there somebody in your family or friends that you can talk to in the mornings. Having a pet can help, it helps me and others. If nothing else, try to find something to fill those hard times. I am not belittling what you are going through, but you are still in an early enough stage that your liver can stay healthy and possibly even heal. The more you stress out and worry, the worse it is for your liver. With proper care and lifestyle awareness, you can have plenty of time to wait out a cure. Do all you can on your part to help your liver not to get to worse stages. You especially don’t want to progress to cirrhosis. As mentioned by many on here, you can help yourself with healthy eating, exercise and keeping toxins to a minimum. Part of that is trying to keep your stress levels lower, which includes not stressing too much about this disease.

Keep up with your doctor’s appointments, keep up the necessary monitoring. I can’t remember if you are on antivirals or not. If so, then take your meds every day. I have mentioned this before, and it may sound easier said than done, but find somewhere you can volunteer. There are so many places that need help and you can even do it remotely a lot of the time, especially due to Covid. Helping others, helps ourselves even more. It might give you that little edge that you need to make it from day to day, week to week.

You really sounded like a cool and nice person when we were in the virtual meetup. I wish you all the best and hope you can find a way to destress. You can do this!

-Paul

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Dear Eddie, listen to Paul. He’s very wise! And I want to reaffirm what he said about the fact that you’re early in the journey of living with hep b, so don’t be too hard on yourself for feeling scared, anxious and stressed. Of course you want to definitely decrease your stress because that’s always something to avoid, especially when living with a chronic liver infection like we all are. However, just as there are 7 stages of grief when someone close to you dies, I think we go through similar stages when we’re first diagnosed with hep b (or any life altering diagnosis): 1. Shock · 2. Denial · 4. Guilt & Pain · 5. Anger · 6. Depression · 7. Acceptance. We don’t necessarily go through all of these stages and we can sometimes go back and forth between stages. But the primary message is that it’s absolutely normal to feel all the different feelings when first diagnosed with hep b, Even after knowingly living with hep b for more than 30 years like myself and having essentially reached acceptance, I can still feel angry or depressed when fatigue wears me down or when I had a liver cancer scare 3 years ago. So as Paul said, the good news that you should focus on is that you’re still young enough to reduce your risk of developing serious liver damage, and a cure might even be found in the next 5-10 years! There’s hope!! Always, Joan

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Thank you @Joan_Block @PuallyHBV for those encouraging words I needed that🙏 but as of right now I don’t have to take any antivirals yet. I just have to go to these appointments every six months. I do have mild fatty liver from alcohol don’t drink any more but I’ve lost 70 pounds on my diet since then My lab results for ultrasound and CT didn’t show anything except some cyst that are benign pretty much but nothing else. everything they said looks good

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Thank You @Joan_Block ,

That was very kind of you to say. I will try to aspire to your kind words as often times I fail; even on here. Even though I am an analytical and technical person, at times, I tend to let my heart and passion get the best of me. It’s a good thing that we have people like you and Thomas that are technical, have great hearts and are wise. Even though Thomas is younger than me, he has been a great example for me this past year of being a good person, following your passion and your heart but with temperament and wisdom. It’s funny because it’s the older looking up to the younger and being inspired. I admire the both of you so much and it makes me want to be a better human being.

-Paul

P.S. This has nothing to do with wisdom, just stupidity: I just started taking my pills even though I took them earlier today. And yes, they are in a weekly pillbox. Good thing I caught it before I took the Vemlidy and Nadalol. What a brain fart!

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I understand what you saying but the weird thing is what I’m researching is hbeag- hbeab+ is more aggressive in liver disease progression then HBeag + if I need treatment is this something to worry about ? as far as good treatment to handle this?

Hi Eddie,

This particular point is correct, but misses a bit of context. You need to look at more than just the HBeAg/Ab. High levels of HBV DNA and HBeAb+ is much worse than low levels of HBV DNA and HBeAb+.

The disease progression is truly measured by ALTs or fibroscan/ultrasound. When these are abnormal, then it’s time to consider treatment under the guidelines.

Thomas

P.S. Just for your peace of mind, I just found this paper: Mortality of inactive hepatitis B virus carriers in Japan is similar to that of the general population

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Hello Everyone, I don’t know if this is a right way to ask a question. I am a 35 year olds Asian male and I am currently living in US. I have been a chronic hepatitis B since I was toddler. But recently, my lastest lab test was disappointed, my alt was 312 and the HBV DNA 78,500,000 . It was scary and my GI doctor has put me on Vemlidy. I have been taken it for about a month now and at same time I have a stomach pain and acid reflux, probably from stress and anxiety, the GI doctor want to do the Endoscopy this week. But I have not have a blood work since then so I don’t know if the drug is working or not and whether my alt number is reduced yet. Thus do you think the endoscopy is safe with my condition? Or should I wait for the blood work before the endoscopy? Furthermore, my primary doctor put me on the antibiotics for H. Pylori, based on the breath test, it is safe to take the antibiotics with the vemlidy and should I wait until the alt and hbv dna to be in normal range, to take the antibiotics?

Thank you for

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Welcome to hepbcommunity Alex,

First, I wanted to make sure you understand that I am not a medical or scientific professional, so the information I am giving you is just based on my own experience and my experience within these forums. Someone with expertise will follow up and either agree with me or correct anything I get wrong.

I believe that you should definitely go to the endoscopy appointment. Regardless of what your CHB status is, an endoscopy should have no negative impact on you medically unless you have something else specific with your esophagus that would be a medical concern. I have CHB and at the stage of cirrhosis and get endoscopies at least annually.

Many on here have posted about stomach pain and some have noted about acid reflux. Depending on various things, if they confirm you have acid reflux or gastritis or other conditions that necessitate it, they might put you on something like Nexium.

Your HBV DNA number is very high and your ALT is high, so it sounds like antiviral treatment was quite necessary. As to the blood tests and waiting for better results before an endoscopy could possibly take awhile. I think it can vary from person to person but sometimes antivirals can take longer to take effect; one month may not be enough. So I think getting that scheduled endoscopy is a good idea since your doctor ordered it.

I was tested for H. Pylori also, but they tested by taking a biopsy during an endoscopy. I didn’t even know they could test for it with your breath. I just looked it up and this sounds pretty standard. since your endoscopy is so soon, you could ask your GI to confirm the H. Pylori during the endoscopy but from what I am reading, the breath test is viable enough. Regardless, if you do decide to take the antibiotics before confirmation from the endoscopy, I don’t believe it will be an issue because I have been prescribed antibiotics many times while on Vemlidy. I try to not have to take antibiotics very often as I have read they can wreak havoc within the body, especially the gut. But if you have H. Pylori then it will be necessary. Can @HealthExperts please confirm or correct me.

Thanks for posting and sharing Alex. You have found a great online resource for information and support and a community of people that care. I am sure one of the experts on this forum will follow up soon. I just wanted to welcome you and maybe give you what little information I might know to help ease your mind in the moment. What you are going through is very scary but the more you read on this forum, the more you will see that it’s not a life sentence and with proper medical care, monitoring and lifestyle changes, you can potentially still live a good life.

Best wishes and be sure to let us know how your endoscopy went,

-Paul

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Hello Paul, thank you for a quick reply, what am I worry about it the sedation, propofol, since it is metabolized by the liver, I don’t know if my liver at this point with inflammation can handle it. Can you please please provide with some of your experience? thank you.

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Hi Alex,

Again, I want to reiterate that I am not a medical professional. Full endoscopies that go further than your throat usually requires sedation. I have cirrhosis and I have had numerous endoscopies over the years and they usually use Propofol. So in MY experience it has had no bad effect. They usually will ask you a bunch of questions (pre anesthesia) to try to ensure you won’t have adverse reactions to it. When looking it up online, it says that there are no associated issues with being sedated with Propofol for a few hours and your liver; even a cirrhotic liver.

Hope this helps you have confidence for your endoscopy. I am sure that your doctors would take all this into account before ordering this procedure. Unless you have some other underlying issue, I don’t see the sedation causing problems for your liver.

-Paul

Hopefully @HealthExperts will correct me if I am wrong.

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Hi Alex

You should of course discuss any concerns with your own doctor. However it is very safe and routine to do endoscopy in people with hepatitis or other liver disease. Any sedation is given in small amounts according to how much you need and clears very quickly. You would be monitored carefully. The Vemlidy is very effective and would be expected to result in rapid improvement in liver tests and DNA level. It does not interact with medications for sedation.

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Hi @AlexH,

I’d like to join Paul in welcoming you to this community forum and hope you find the support you need here.

I can only agree with both Paul and Simone (who is a senior liver disease specialist and President of the Gastroenterological Society of Australia, so is outstandingly experienced to answer your question).

If you have concerns about the antibiotics and your liver health, you should raise it with your liver specialist. Perhaps @MarkDouglas or @simone.strasser could comment on how likely it is that there would be any problems associated with it.

Thomas

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Took my kid to the dentist today. Switch dentist and filled out the new patient form. My kids do not have hep b and are vaccinated. The form ask for health condition including liver disease. Wonder if they can deny you as a patient.

I ask bc now you can get fired for not being vaccinated, you can get denied medical services, private practices, if you have covid. So why not hepatitis b.

If I can deny you if you have covid, why couldn’t I deny you for having hepatitis. It’s the new norm and it’s just scary to know covid and hepatitis could be seen as the same.

@NeptuneJ ,

It’s interesting that you bring this up because I just went to my longtime dentist, who knows I have Hep B. I am very upfront in disclosing my status to all my doctors and thankfully it’s never been a problem. But I’m kind of a naturalist in that I like to refrain from a lot of xrays and chemical treatments unless absolutely necessary and I get kind of tired of my dentist always trying to push fluoride treatments on me, especially since I already have healthy teeth/gums. This past visit, when they tried to sell me on the fluoride treatment again I said, you know I have hepatitis B, right? So I like to be careful about what I put into my body that my liver needs to process. And finally, a flip seem to switch and the dentist responded, Oh, okay that makes more sense! You should have just said that! It’s probably the first time ever having hepatitis actually helped me…

I’m just being facetious but I can understand your concern. Fortunately for us here in the U.S., HBV is a protected health under the American’s Disability Act (ADA).

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