Upper right quadrant pain

General Discussion
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Hello @ThomasTu, @Joan_Block, @SS090711 and everyone:

I have a few updates since last post:

  1. I moved to a new location where there is a research university and many more health services. I meet with my new doctor in two weeks who is also affiliated with Infectious Diseases Society of America.

  2. I will be scheduling an elastography to see if the “mild coarsening” on my liver is abnormal. My former doctor said that the observation tends to be “subjective” based on the radiologist. She also mentioned that it is possible that it has always been there but never deemed to be an issue by the past two radiologists. So more waiting, more anxiety, more stress.

  3. Got new HBV Real-Time PCR Quant results:

. HBV IU/ml is now 1,400 which is UP from 350 in October 2021 (a whopping 400% increase!)
. log10 HBV IU/ml is 3.146 which is UP from 2.544 in October 2021

What does all of this mean when it says the reportable range for this essay is 10 IU/ml to 1 billion IU/ml?

Do people typically start medication with these numbers? My doctor has not mentioned medication.

Are there theories on why such a high % increase?

  1. Two blood tests show that I am NOW also pre-diabetic (I know that at least one grandparent had diabetes). What concerns me is that I had already altered my diet, lost weight, and had exercise routine but still pre-diabetic.

Any other thoughts are also welcome. I try so hard to stay positive but a lot is happening so fast since my March 2021 diagnosis.

Thank you so much! This community is incredibly uplifting and helpful to my mental health concerns related to my HepB.

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Hi @bob,

Thank you for sharing your story. I had hoped to see some feedback regarding your NAC experience. Are you comfortable sharing your viral load, AST, and ALT numbers? I posted mine in this thread as well.

I hope you are still doing well. Stay hopeful.

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Sure @hopefulone. Back when I got a 9.1kPa on fibroscan (moderate bordering on severe liver fibrosis), AFP was at 45, ALT was at about 45 too, and viral load was around 1000-2000 and most of the other results were not very remarkable. Since then I started TAF and within the first couple of months viral load became undetectable, and AFP went down to 19

Now I still get the feeling of having a swollen liver when I stop taking NAC, though it’s not as intense, and NAC does make it go away. Since there’s nothing to make it mad anymore I guess I probably do have some fibrosis, I’m not sure what NAC does exactly, maybe it somehow makes liver stiffness decrease overnight even in cases of having fibrosis? I can’t really understand it and I don’t think anyone does at present

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@bob,

Thank you for sharing your “numbers.” I find that people sharing numbers are really helpful. One thing I seem to be learning based on the limited experiences shared in this community is that liver impact is a crap shoot. I once thought that high viral load was a sure contributor to liver damage based on something else I read somewhere in this forum but that does not seem to be the case at all. It also seems that, like you say, there’s a lot of limited understanding out there which is why this forum is a kind of data source for researchers.

My recent bloodwork from January 2023 show that my ALT and AST are fine but my April 2023 viral load has gone from 350 to 1400 within a year of testing. Of my last three ultrasounds, the last one showed “mild coarsening” of on the liver so now I am going for an elastography since, apparently, “mild coarsening” is a subjective diagnosis based on the radiologist looking at the ultrasound – so more stress, frustration, and anxiety.

I was diagnosed March 2021 after donating blood at work.

Thank you again!

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Hi @hopefulone ,

No problem about response time. I also get it about post hopping- in fact, I am doing it right now with this response. No need to repeat content from a different post, I get all posts in my email anyhow- unless the spam filter hijacks them. I thought the number of HBV population in the world was more like 300 million but maybe that’s without the parameters you stated.

I am SO glad that you moved near a research university. I live within 45 minutes of a research university. My hepatologist works out of their liver transplant department as that department is the only one that has hepatologists at the university. I guess I am in good hands if/when I need a transplant.

I’m still not sure if I ever knew how to do log conversions. I think I thought I did at one point, but if I did, I have forgotten now… lol. I am pretty sure that “reportable range for this essay is 10 IU/ml to 1 billion IU/ml” is just the range of the possible results those tests can report. Minimum of 10 and max of 1 billion.

I’ll leave the rest to the experts. As you know, I am not an expert. I was just so stoked when I read that you were able to move somewhere close to much better healthcare. What a relief!

-Paul

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Good morning @PuallyHBV,

Thank you for your response and continued encouragement. Encouraging each other is SOOOO important since positivity probably produces some kind of chemical in our brain which triggers other chemicals which are probably good for our overall health. For me, my stress and anxiety are felt in the “pit of my stomach.”

I am sure my previous doctors probably meant well, but their Hep knowledge was just limited. I am not sure I was getting the best advice or responses to my concerns, especially the upper right quadrant pain and liver care. I never got a pamphlet, a resource number or website, or a list of “care” suggestions which is why the HepB Foundation is really a LIFE SAVER for so many people.

I saw the 2 billion infected number on the HepB Foundation website so I gather that’s credible information. I was very pleased to see the March 2023 press release on the Hep Foundation website encouraging more testing for adults 19 and over so more people can be informed.

It would be great if our health care system simply proactively included testing for HepB and the other major infectious diseases that have no symptoms (damn near all of them!) which would also save lives and reduce healthcare costs later in one’s life.

Well, thank you again, and stay healthy and hopeful.

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This is a small jump, but this is known to happen in some phases of HBV. It is important to continue monitoring to see if this is a sustained increase or just a blip.

This is the number of people with chronic HBV infection, 2 billion is the estimated number of people who have been exposed to HBV.

Hope this helps,
Thomas

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Hello @PuallyHBV,

How are you? From time to time, I find myself reading old messages. I think subconsciously I’m in search for something or some answers or some clarity. Or maybe I’m just searching for solidarity and community. I read your message from October 2021 or 2022 I believe where you talked about your troubles with abdomen pain.

First, how have those been for you? I apologize if I missed your update on this. Hard to keep all the stories attached to the right person sometimes. Do you still have these flareups?

Second, I have been dealing with very mild abdomen discomfort, ironically, since my diagnosis in March 2021. Given the nature of my work and the mental stress from the diagnosis, it’s hard to tell what’s the real cause. But I want to share my symptoms in case any relate or are familiar:

. Discomfort has been felt in all areas of the abdomen: bottom, middle, top, sides
. Bowel movements give me a lot of relief
. Constipation was also a probably (which has subsided since I cut back on the bananas! :smile:)
. Discomfort across the entire length of the base and sides of my rib cage
. Discomfort at the sternum
. Discomfort “band” around back and abdomen
. (new) Discomfort on right side and left side and both sides of the back where I thought I was having kidney issues (unremarkable on ultrasounds :pray:t5:)
. Throbbing sensation along the right side
. Discomfort and short bursts of “stinging” sensation around right shoulder blade

Massaging the abdomen area and bowel movement also give relief. I had a colonoscopy around the same time of diagnosis (yes, what a stressful period March/April 2021 was for my health). My GI walked me through my diagnosis, said that I was “fine,” told me not to worry so much, and theorized based on my testing results that I probably was infected at birth which no doctor has questioned at this point.

Hope you’re well.

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Hi @hopefulone ,

I think I did respond to you about abdominal pain, but it IS hard to remember details of each post and each conversation, especially since they can span multiple threads. Instead of finding the previous post, I am just going to start over since some of the parameters you state in this post wasn’t elaborated on or discussed in my last response about abdominal pain.

For the most part, I am better for the overall generalized abdominal pain that I was having. This was just pain through my entire abdomen. It was the worst when I was laying down. I have ended up somehow with a very sensitive nervous system it seems. When I am laying down, my ribs and my abdomen would hurt. I went to a few different doctors about this. The GI and the pain specialist both ended up feeling that it had something to do with my nervous system and they both put me on neurological meds. This has helped that overall generalized pain. They also sent me to a rheumatologist who checked me for something called PAN (PolyArteritisNodosa). She didn’t find that but instead found that I have vasculitis.

The generalized pain wasn’t so bad when it came to the top end pain. It was maybe a constant 5-7 on the scale and at its worst when I was laying down trying to sleep. What was the worst pain that was almost unbearable was what I would call digestive pain. Only because the pain seemed to include everything in my digestive system, from my stomach down to my ‘exit’. It was this multiple pain that would throb, burn, stab all parts of my digestive system randomly or all of it at the same time. The GI did extensive tests and tried different meds that didn’t work. He has yet been able to find a conclusive answer. When this pain hits a 8.5 to 9, I have to take a pain pill to keep it from getting to a 9.5 when I would start freaking out thinking I was going to have to call an ambulance. I learned that if I don’t take the pain pill early enough that I can get into the danger zone. The problem is that the pain pills make me feel so sick that I pretty much become incapacitated. This is one of the things that I absolutely believe that starting treatment caused. I had NEVER had anything close to these types of issues with my digestive system prior to starting treatment. I basically had an iron stomach my whole life up till this point. The funny thing is again my GI has tested so many things like Celiac’s and other diseases. I have tried all types of diets to see if a certain type of food was causing the problem. We have tried omitting particular food items to see if they could be causing reactions. What made it more perplexing is that the first 3-6 months after starting treatment, I lost over 45 pounds at one point. The first year or two, I would go days without eating and this pain would still happen at its worst. So that perplexed the doctors because it was my digestive system having this pain and I would still have it after days of not eating, but I would also have it when I was eating or randomly just whenever.

One thing that I notice is different is that you have relief with bowel movements. Not the case with me, it might or it might not. Sometimes, the pain was the worst while I was having a BM. Things are better now because I have figured out a system. I have had it for so long now that I can feel different pains happening and intensity’s and as long as I take a pain pill before it hits a 9 then it most often subsides after an hour or two. So often before, I would be shaking and rocking in bed just praying that I could hold on and thinking is this it? Am I going to die today? It was even worse when I was at that point but stuck on the toilet and couldn’t even lay my head down.

Constipation, diarrhea or regularity wasn’t a determining factor either. It was equally random.

I also had pain in my sternum but finally after complaining to multiple doctors over the years, they finally checked my sternum specifically and found that I have a hernia there. So at least there was an explanation for that pain.

I think it was in 2020 or 21 when I had my last colonoscopy and I had multiple lesions and polyps. (I still haven’t had a medical professional explain to me what the difference between lesions, cysts and polyps are) that were pre-cancerous that had to removed. Even that didn’t help the digestive type pain I had been having.

I literally ‘feel’ for you. That is one thing I absolutely have empathy for is people that suffer pain, extreme, random and chronic pain is one of the worst things I have had to deal with in life and believe me, I have been through a lot. This kind of pain is very debilitating and often times you don’t really know what someone is suffering through because pain isn’t really something you can see. It’s something that causes you to curl up like a ball and hide and just hold on for dear life. You are along for the ride and you don’t have much if any control. I have had compound fractures in my leg, fracture in my tailbone, broken a wrist and I’d say the three worst pains I have ever experienced is when I have a muscle cramp in my calf and I can’t fix it before it fully locks up. Once it locks, it is a horrendous pain and other symptoms that I have nightmares about. I have had two liver biopsies in my life. One was done by a specialist doctor by hand and it wasn’t too bad. Maybe a day of medium pain. The second time was at Kaiser and it was done by a technician using a machine. They took two samples and before they even brought me to recovery, I was screaming in pain. The third is the ‘digestive system’ type pain and it’s probably the worst because of the frequency. I can have these pain ‘flare-ups’ that can be one day a few days or even two weeks. At least I have a system now and a little more control over these ‘flare-ups’ than before.

I really hope you get answers to your different pains. You really have to advocate for yourself because most people don’t understand what pain can truly be. People might think you should just deal with it or it can’t be THAT bad. Until you have had pain that you thought could kill you, you just don’t truly know. This is one of those things that people that have been there can absolutely relate and those that haven’t just experientially can’t.

-Paul

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Hi @hopefulone!

Thanks for sharing your results and concerns. Its great to know that you have moved close to a better healthcare facility. I think you need not worry too much about the increase in viral load. My husband’s viral load jumped from not detectable (<10IU/ML) in may 2022 to 328 IU/ML in dec 2022. The doctor said that was normal in some phases of Chronic HBV and that they shall look into the upcoming June 2023 reports to analyze a trend. If its less or the same then I think they will not bother but if it increases substantially then maybe they will consider medication. I think your doctor did not mention medication as the load is still below 2000.

Also, the fact that you are pre-diabetic has little to do with the chronic HBV. Exercise and diet definitely play an important role in avoiding diabetes but so does stress. By reading your message I can feel that you are very worried about the uncertainties and uncontrollable developments that come with this condition. I would urge you to practice yoga/meditation for anxiety control. Trust me it helps. I love that you see positive Youtube videos to help you relax. When my husband got diagnosed in October 2021, I was just 21 days postpartum and my stress level was unimaginable. My BP shot up as a result. So, stress management definitely plays an important role here.
Also, i am sharing something unrelated to the discussion. There is this very famous bollywood star called Amitabh Bachchan( you can look him up on google). He is 80 years old. He has Chronic Hep B. He had also contracted Tuberculosis but is now inactive. 75% of his liver is cirrhotic since 2000. He also has some other autoimmune disease i can’t remember the name. But he is still going strong. He is working on several movies simultaneously and is very fit and active. He is also the Hepatitis Goodwill Ambassador of WHO. I just wanted to share this with you to give you encouragement that it is possible to live long and active with CHB. Be positive everything will be fine. We got this!

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Hi @PuallyHBV,

Thank you for sharing (and retelling) your story with me/the group. I FEEL for you! You are like our hero! Your stories of surviving pain and dealing with the cirrhosis and other conditions are simply heroic. Thank you!!

Compared to your story, I have nothing to complain about. Let me clarify: I don’t experience pain in the Upper right quadrant area of my body or the abdomen. Instead, I experience the annoying “sensations” (throbbing mostly) and would not want to insult anyone by calling them pain. I’m just trying to understand others’ experiences to see if what I’m dealing with is part of a long journey. My doctors just feel around the area but never feel anything of concern. No problems with fluid in lungs, etc. My former doctors mentioned that sometimes an out of place rib bone could cause discomfort in the area that concerns me the most – but that was it. I just think my former doctors should have done more probing. I hope my new doctor, who is affiliated with the infectious diseases society of America, will be more insightful.

Thank you again and keep taking care of yourself. Stay hopeful.

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Hi @SS090711, @PuallyHBV , @ThomasTu, and others:

Thank you @SS090711 for your message, kind words, encouragement, and for sharing the Bollywood actor’s story (Amitabh Bachchan). I hope you, the child, and your husband are well. I noticed that your husband was diagnosed a few months after me (March 2021 for me). I’m 53 now.

I googled the Bollywood and was inspired by his story. I noted this quote:

“Due to a bad blood infusion, 75 per cent of my liver was damaged. But because I was able to detect it even after a period of 20 years when 75 per cent of my liver was gone, I’m still surviving on 25 per cent and this is what I’m able to propagate that get yourself tested, get yourself diagnosed and then there is a cure.”

My problem is that I google too much information then freak myself out. I need to do what you, @ThomasTu, @PuallyHBV, @Joan_Block, and others have advised which is to stay positive, live well, and maintain good communications with my doctor.

Thank you!

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Hi @hopefulone ,

Thank you for your kindness, but I am no hero. I often have my times of depression, anger, hopelessness, fear and the feeling of being all alone. I am an orphan and have no family, so that makes things a little harder. Although, I know that there are at least a few others in this community that suffer this alone and my heart goes out to them. A good support system or any support system is better than nothing.

Please never, never say that your pain isn’t worth complaining about. Pain is relative. When you break a bone, the pain at that time is usually excruciating. It isn’t until you experience something worse that you can compare. Some people have depression that can manifest itself in physical pain. Many people would think that that pain is not real or measurable or comparative to tangible physical pain (tangible in the sense that you can see a broken bone). You can’t measure the pain that someone feels from depression. Who are we to tell someone that they aren’t suffering or suffering as badly as someone with a broken bone. We could have the exact same type of injury and one of us could feel it as a 7 and the other feel it is a 10. The point is that, your pain and what you suffer is significant if it affects you. Pain is not something we are SUPPOSED to live with. It is usually a sign that something is not right.

I share my experiences when I feel it might help someone or that someone can relate. It is not to complain or be a downer. Usually I try to give people the positive side of things or some type of hope. When I share about my own situation and experiences it is to provide information or let others feel comforted by relating to me. It’s an odd thing to appreciate that other people suffer what you do. When I first found this community (it started as the hep-b list) and read about people suffering the way I did, I broke down and cried… and cried… and it was sad, but it was also magical, in that it comforted me so much to know that I am not alone in this. Even though I will probably never meet any of you in real life, having the ability to connect with you through written word and in virtual meet-ups gives me comfort. Helping other people gives me purpose and reading and hearing all your stories gives me hope. Just writing this paragraph causes my tears to flow. I think I am a decently open person in real life. Yet, I share certain things in this community that I hardly would want to make myself vulnerable to in real life.

As SS090711 mentioned, you can still live a long time with cirrhosis. That man that is living with only 25% of his liver and fighting the good fight is an inspiration. I was told by Kaiser in 2007, that I only had 5 years to live and that was way before I even had cirrhosis. Well, I made it past 2012. Then, when I was diagnosed with cirrhosis in 2017 and they were doing MELD score tests on me for a liver transplant, I was preparing myself for the worst. It’s been 6 years now and I am still kicking. I may not be fighting the good fight but at least I am fighting. Part of that fight is helping in this community in ways that I can.

The Hep-B List was an email driven message board system by the Hep B Foundation that was the best that was available for people with Chronic Hep B to connect and communicate at that time. When Thomas decided to evolve that system and create this community where we have more expanded capability to communicate, I jumped on board as a dedicated member. I was in tune with Thomas’ dream and desire to create a community for people with Hep B that would provide expert information, resources and an intimate community where we could share comradery and solidarity and do this for the entire world. In this manner, anyone who has the capability to get online, can find us. This was a worthy cause for me to be a part of.

Hopefulone, you should really try to get in on the monthly virtual meet-ups. There is one tomorrow (Friday, April 27th) at 2pm PST (5pm EST). Maybe this post will encourage any others to join this meet-up or a future one. If anyone wants to join April’s meetup and didn’t get a chance to vote in the Doodle poll, then please PM (Private Message) @Mylisa . You can click on her @ that I just posted and that should bring you to her profile page. Then on the top right should see the MESSAGE button. Then let her know you would like to join the meet-up and provide her your email address so she can send you the email invite for the Zoom virtual meet-up.

Sorry, I swear I was just starting out this message to respond to you, and then it got more involved and personal and then turned into a promotional… lol Oh… hey… you noted that you are 53, same here! Well, for less than another month.

Hang tight and keep posting when you are up to it, it can be quite cathartic. Plus, you bring good conversation and of course… hope.

-Paul

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Hello Bob. Thank you for this information. How are you feeling now? Because i am also experiencing this same thing and all my results shows nothing wrong. I’m just worried because of the discomfort(pressure and occasional pain) i get. Thanks

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I haven’t had any more tests but when I stop NAC the swollen liver feeling comes back, consistently enough that I think I probably of have fibrosis and for some reason NAC makes it feel better and makes the Fibroscan results look good after about a week. No idea why, could only speculate

Anyway, what I found helps a lot is to take 3 grams of NAC a day until I feel better, then I stop for a bit until it gets really uncomfortable again

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Dear Paul
I really don’t like commenting on your threads because of my monotony on them -that is, you are a true hero. One tested and approved. Back and forward, Paul having to belong to a family doesn’t have to naturally translate to strong support system/group. I have gone through fires of pain with all parents, brothers and sister, but non has ever been there for me save my spouse and mother. Only my wife visited me in hospital during my hepatectomy.
Right now I and dealing with sometime severe pain on my ribs more so under my armpit and back. I know what it means to be in pain. I have not dealt with right upper abdominal pain even with HCC. I can’t tell why.
Kinoti

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Hi @kinoti,

I am sorry for the pain you are suffering. Hopefully, you still have some pain meds. Is it very difficult for you to go to your doctor so you can get updated support for these types of things?

You are the only person I have ever known that has had HCC and part of their liver resected and my whole body cringes just imagining the pain, so you too are a hero. In fact, I think everyone on here that is willing to share just a bit of themselves to give comfort, help others relate, or try to help another of us in any way, is a hero.

Hey, it would be nice to see you at one of the virtual meetups sometime. Do you have a device that can run Zoom and do you have internet? That’s all you need to join us.

-Paul

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Hi Paul
Thanks for your concern and compliments. I am scheduled for a meeting with my surgeon on 9.06.023,but I have several tests to run before then which keeps me awake.
Interesting, I left hospital on 29.11.2022 with no pain management drugs. The pain I experienced then was only on the incision marks. Although horrible, my doctor recommended I learn to cope with it. Today he has prescribed some pain killers after linking on phone.
I use a cellphone that has zoom app so I can join you. Before my surgery we had zoom chat with @ Thomas a conversation that was very encouraging.
My heart yearns to meet several guys in our group one on one at least once in my life. You are definitely one of them, @Thomas,@Simone Strasser,@ Chari Cohen@John Tavis and others.
May God give you long life to continue encouraging others.
Cheers
Kinoti

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@PuallyHBV
Your story is so sad, horrible for you. I’m so sorry, pain is so debilitating.
I hope things have gotten better for you.
Blessings
Caraline

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Was recently diagnosed.
Never had symptoms before but i recently started experiencing crampy lower right pain. For those people who have a experienced a myriad of symptoms or are experts. Any idea if this is a familiar symptom or could it just be something else causing it. Such is muscle pains.

Thanks you in advance.