Living with cirrhosis

Living With Hep B Treatment and Monitoring
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Hi Karin,

I am glad that cirrhosis hasn’t had too bad an impact on you. I am not sure how infections affect those of us with cirrhosis, but I believe that we are more susceptible if not compromised. It may also depend on what stage of cirrhosis and what other medical conditions you have.

Unfortunately, the level of cirrhosis I have has an impact on my gall bladder, spleen, portal vein and other things I can’t even remember. More recently, it is having an effect on my kidneys, pancreas and I just had to have esophageal varices banding surgery and they were going to do more in a couple of weeks and on my duodenum too. I had complications with that surgery, so they are looking at other methods of treatment.

I am also glad that you are eligible for the booster already. Don’t forget your flu shot also.

All the best to you on low reactions to the booster,

-Paul

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Paul, I’m so sorry to hear that you have so many medical issues related to your cirrhosis. I’m thinking yours must have progressed quite a bit farther faster, as we’ve both had HBV from birth, but the progression of this disease is so individual and depends on so many factors, including the genotype we have. At least you are getting treatment and informing yourself, which is a powerful tool. I’m convinced that we can do a lot to improve our health with lifestyle adjustments, even when we have serious health issues but it’s not easy. And it’s harder when we’re not feeling well to be hopeful that we’ll get better. But our bodies do have a capacity to heal a lot of things and it’s important that we keep that in mind during the tough times.
My mother was diagnosed with cirrhosis in her early twenties and given an estimate of having only a few years to live. She went on to have 3 kids and will be 95 in December. Amazingly, after 50 years of chronic HBV, she cleared the virus and developed antibodies at age 75, without treatment. Of course we can’t all be that fortunate but you never know…so hang in there! Karin

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Hi Karin,

In 2007, Kaiser gave me 5 years to live. Well, it’s way past 2012 and I am still kicking. However, I did not start treatment till 2017 and I should have started back before 2004 after I was first diagnosed with fibrosis and my numbers were well within the range of needing treatment. Back then, there wasn’t many options other than Interferon. Then, I think it was around 2008 or so, a hepatologist had mentioned barraclude but he ended up retiring before I ever decided to start treatment and then I let it go. My career and fear of treatment and I guess not being educated enough about CHB and antivirals made me wait until I started having worsened medical issues and they diagnosed me with cirrhosis in 2016.

It’s the quality of life issues that I deal with even though I try my best to stay mentally and physically in the game. I do a lot of volunteer work because what they say about “giving is receiving” is so true. When you help other people, often times it does more for you than them. I do have to say that with all the conditions I have, I am still able to do a decent amount. There are times however, that things are harder and I may not post on here for months and other times I may be more actively posting. It’s the daily pain that gets tedious but the random GI flare-ups that are excruciating when I am just pleading to God to help me make it through, that are so rough.

I didn’t have much of a support system and had never even had any interaction with someone else with CHB until I found the hblist which eventually evolved to hepbcommunity. When I first found the hblist and got to read posts from people that had a lot of the same fears, medical issues, life struggles, isolation and had CHB, it was like a lightbulb turned on within my spirit and I felt such less isolation knowing I was not alone. That’s why I have been hoping that those that have cirrhosis would be more outspoken within this community, so that maybe I can find even more commonality with what I am experiencing within this subset.

By the way, your mother sounds incredible and I hope to have even a fraction of that fortitude.

Sincerely,

Paul

@ThomasTu would you mind explaining how someone’s genotype plays a part with HBV, CHB and cirrhosis?

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Hi @PuallyHBV,

Virus genotype and how it affects disease progression is something that is still under research. I’ve attached below a table of different outcomes that are associated with each genotype (from the paper I coauthored here: https://www.nature.com/articles/s41575-020-0296-6). We don’t really know what drives these differences (whether it’s the patient themselves, the virus, or a combination of the two), but it’s still a matter of research.

Table 2
Table 2482×813 149 KB

Hope this helps,
Thomas

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Hi Karin, what an inspiring story about your mother. Wow!! Although I don’t have any expectation that my virus will be cleared since I’m already 62 years old and have been on antivirals for almost 20 years, it’s still really neat to hear a success story!! And to have outlived the prediction that cirrhosis would kill her in her 20’s is amazing. Just goes to show that one can never live (or die) by what a medical professional tells you. As both you and Paul have written about, it’s important to have a strong support network, live healthfully, get the best medical care possible, and maintain hope. Thanks to both of your for your wisdom!! Always, Joan

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Hi @Karin,

Your post and your mother’s story are simply incredible and so hopeful to so many. Thank you for sharing that story. You wrote: “My mother was diagnosed with cirrhosis in her early twenties and given an estimate of having only a few years to live. She went on to have 3 kids and will be 95 in December. Amazingly, after 50 years of chronic HBV, she cleared the virus and developed antibodies at age 75, without treatment.” I am a person of faith, so I will call this an example of a miracle!

I was diagnosed March 2021. My doctors and GI theorize that I may have contracted at birth given the results of blood tests and elimination of most risk factors. Additionally, ultrasound results are normal too. But I now start this new journey of regular monitoring and, of course, stressing every six months.

Your mother’s situation is also proof of @ThomasTu and @Joan_Block reminding us that we CAN live long healthy lives unless some other health issues are fighting against us.

Just wanted to share my thoughts and to so “thank you” for inspiring me and us.

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Would you mind sharing how you got through these flare ups? I think others in similar situations may find it helpful. Thank you and please stay encouraged in your spirit which could also impact your mental health.

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Hi @hopefulone ,

When I say GI flareups, it’s the term I use with my doctors to define that I am having generalized pain within my entire midsection. From around my sternum all the way down to my ‘exit’. I have had quite a few doctors try to figure out what the heck is going on inside or maybe not trying to figure it out but at least treat it. I can’t even remember all the different meds they have had me try. Most of them would make me really sick and bedridden. They have tried treatments for IBD/IBS, anti-spasmodics and then many pain meds just to try help with the pain of it all.

The only pain med they have tried that works at all is hydrocodone. This is good and bad news however. On one side of the coin, at least I have something I can mostly rely on for when the pain gets so excruciating that I would be going to the hospital otherwise. On the flip side of the coin, just like other pain meds, it makes me feel sick but to a lesser degree than other ones they have put me on. My head and shoulders get really heavy, I get whole body itching and can get a sort of odd nauseating headache and to top it off, I get a loopy feeling (in a bad way, not in a euphoric way). I don’t know how people can get addicted to this stuff but I guess I am in the minority when it comes to issues with it.

I learned that I have to take it by the time my pain hits an 8-8.5 because if I let the pain get to a 9-9.5, it may not work. One odd thing is that it can take an hour to two before it starts kicking in and working when it’s supposed to only take about 20 minutes or so. I equated this to the liver not processing it normally the way people without any liver disease would process it. During the 1-2 hours it takes before the pain med kicks in, I will do breathing exercises and rub my abdomen in a clockwise circle. I will also do this odd thing (without even thinking about it) where I rock my legs from side to side while laying in bed. I have tried heat and cold and neither helped. When I am having the real bad GI flareups (that can be 1-3 times a week), I am just laying in bed shaking and trying to do the above mentioned until the pain meds kick in.

There is a lot more to the whole picture and the whole story but I am trying to focus on your question of what do I do when the pain is excruciating to the point that I am just holding on for dear life. Pain meds is probably not the answer people are hoping for, but when you get to the point that I do, over the past 5 years, that’s all the doctors and I have been able to find that will actually work. Hopefully we will find a better solution and if my doctors and I do, I will post an update.

I hope this helps anyone and I feel for any of you that suffer chronic pain and pain flareups in any part of their body. My heart goes out to you.

-Paul

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I’m so sorry to hear about this that’s gotta be tuff. I’m Korean my mom would to take me to go see an acupuncture doctor That was Korean also when I would have pain in my stomach sometimes as a kid even when I fractured my arm he did acupuncture on it and the pain went away maybe something you could try? also I have a friend that does CBD oil from a company called green compass it’s THC free all organic and that helps him with his body pains also because he was on pills a long time and just couldn’t take it anymore because his liver would hurt from the pain drug an make him feel sick and ever since he got on that CBD oil he said he wish he knew about cbd along time ago because he feels no pain and he feels normal and energetic . well I hope you start feeling better soon Paully i’ll keep you in my prayers🙏

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Thanks Eddie,

I knew there was something that resonated with me more than just your personality. I am half Korean also. I am not certain if they are half or full but I believe @Joan_Block and @NeptuneJ are Korean also. I am sure there are plenty of others within this community as well, but those are the two I can recall.

I have tried so many things to overcome the side-effects of meds, the conditions and issues of cirrhosis and what it has done to my other organs. I have tried acupuncture, acupressure, physical therapy, occupational therapy, psychology, nutrition, exercise, and yes, even cbd. I have been quite desperate to alleviate pain and other issues over the past five… well almost five years.

However, I am starting to agree with the many doctors and specialists I have seen over that time span, that maybe I am just stuck the way things are. The damage has been done and maybe it’s my own fault since I didn’t agree and take the need for treatment seriously until I was already at the cirrhosis stage.

I was hoping (and still am) that this topic category would allow for others with cirrhosis to post their experience and in doing so, I would be able to relate with them or at least see where I stood relatively to others with cirrhosis.

I really want to help other people as much as I can with whatever time I have left. That is why I feel that I am in such angst to improve my quality of life. There is so much more I want to do, so much more I want to experience and so much more I want to do to help people and make more of an impact on the world or at least my community.

At least I am still in a compensated stage of cirrhosis. With all the medical conditions I have (The list of diagnoses from doctors could be an essay), maybe I should just count myself lucky to be able to function how I do. When I was first diagnosed with cirrhosis and my viral load was 3-4 million, I had to do the MELD tests for liver transplant. I was told that they would probably have to do a liver transplant if antivirals didn’t work. My hepatologist at the time didn’t seem very confident about the antivirals and seemed surprised how well they worked on my viral load and all the numbers hepatologists predominantly care about. I should probably be counting myself lucky instead of advocating so much for them to fix me. I think I could deal with all the rest if I could get the pain flare-ups and GI flare-ups to subside. Those are the two main things that disrupt my life so much. But again, maybe I should be satisfied that I am not in a hospital or dealing with all that comes with a liver transplant or even dead. Although, if you are dead then you wouldn’t be concerned with quality of life… lol

Thanks again for your prayers Eddie, I will keep you in mine also,

-Paul

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Just came from my brothers friend’s funeral. He died of liver failure. I know it was not hepatitis related. We were talking about cirrhosis and health afterwards. It kind of hit home with me because of hepatitis b.

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Sorry to hear about your brother, @NeptuneJ. That really sucks. I hope you’re getting the support you need from the people around you.

I have been in a similar situation: my grandpa recently passed away from metastatic cancer. Again, not because of Hep B, but it does bring to mind the possibilities that we ourselves could face in our futures.

My sincerest condolences,
Thomas

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Thank you. But it was my brothers friend and not my brother. I knew the guy over 25 years. You are just a kind person!

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Apologies! I was responding before my morning coffee and misread you post. Nevertheless, I’ll keep both of you in my thoughts.

TT

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Sorry to hear that Johnny,

Condolences to both you and Thomas for your loss. It does remind us to make the most of whatever time we have left on this Earth and the time we have with people we care about because you never know when we can lose them.

All my best,

Paul

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@NeptuneJ im so sorry to hear this my condolences sincerely I’ve lost a lot of friends too I know how you feel🙏

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@Neptune, please add my condolences to the other messages you received about the death of your longtime friend. As Paul reminds us, we have to enjoy every day for ourselves and with our loved ones. Although I’m not generally a “half full glass” kind of person, I feel the need to point out that even though your friend passed from liver failure, it wasn’t because of hep b. That’s reminder to all of us that hep b is not the only fatal liver disease out there. I know that’s not of great help or reassurance to us personally, but I felt it was noteworthy. Always, Joan

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As always Thank You! Hep b isn’t the only cause of liver related deaths. But just the conversation at the funeral among us was liver talk. How he looked unhealthy for a long time, abusing body, etc. it made me think if I was to go early, what would people say about me

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Hi @Neptune, I just attended a memorial service today for a neighbor who was beloved. And to respond to what you wrote above about your friend’s service, I realize that as morbid as this sounds, I want to to try to live my life the way that I want to be remembered: kind, caring and generous in spirit and in deeds! Always, Joan

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@Joan_Block, yes I agree. When something happened that gives me perspective on life, I realize I can alway do better and realize how precious life is.

We all get the 24 hours a day, tye difference is how we live it.

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