Hepatitis E, potential hysterectomy next month!

Hi, I ended up in hospital in the middle of January after assuming the Flu that I was suffering had affected my kidney function (I have a CKD condition, Alport Syndrome, with about 50% function) My ALT was 4377 & ALP 758!!! After many tests they found I had Hepatitis E & discharged me after a biopsy, though signed off from work for a month!

I still feel exhausted & depression is starting to kick in (even though I am on anti depressants.

Consultant said on check up a couple of weeks ago that although numbers where now normal he didn't want me back at work until he got my biopsy results & see me again on 26th.

However, I am awaiting a hysterectomy due to a condition called adenomyosis - I know, if I was a dog..................believe me that's how I feel sometimes!!! And guess what - I just got a call from the hospital telling me I can have the op on 6th March. So I call the gastro team to check I will be ok - & no-one is there to answer my question!!!

Does anyone have any ideas, I am now very anxious & frustrated to top it all off!!

Please help.

xx

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  • Alarming numbers there. You been through the mill! I found this on this site ;

    "There is no specific treatment for hepatitis E infection lasting less than six months (acute). It is regarded as a self-limiting disease, meaning that it runs a defined or limited course. Most people who have hepatitis E will go on to recover completely within four weeks from the start of their symptoms."

    Notice the 4 weeks, i think you deserve the 4 weeks off, I should think they will test your blood again.

    any idea as to how you got it? its passed from some under cooked meats and from stools/urine to mouth. So family should be careful if using the same toilet as you, wash their hands etc.

    Hoping for a speedy recovery for you

  • Exactly what the Dr said when she admitted me - "Alarming!!" LOL.

    Yes, I have more blood tests on Tuesday, ready for my consultation on Thursday. I have gone ahead & booked my hysterectomy, so I also have my pre-assessment on Tuesday!!!

    Dr's said undercooked pork - which my partner does not eat, so we know exactly when & where I got it, which also ties in with the incubation period.

    Thank you, feel like poop!!LOL

    x

  • Hi! I'm very sorry to hear what you're going through. Be strong and just think positive. Life is a miracle itself so anything can happen. I'll pray for you. I'm a hepa B carrier

  • Thank you so much, though depression kicking in & driving me to the wine again - which my body really could do without!!!!

    I'll get there, eventually.

    xx

  • sorry i didnt answer all your question. I personally would forget the hysterectomy for now, your Liver is your main priority now, im suprised the doctor hasnt put the breaks on it already. Recovering from a Liver problem can take months, maybe even a year or 2.

    What the high enzymes mean is liver cells were being destroyed because your liver is inflamed and then they leaked into the blood and were then picked up in the blood test. Your numbers are the highest I have ever seen! Your liver may fully recover and you must have been in good shape before this happened, if your were a heavy drinker it could have been curtains.

    Im not suprised you feel bad, take your time off and eat a liver friendly diet, no sugars or fats, no red meat, get some light exercise. Some anti-depressants are hard on the liver, check with your doctor about these, they maybe able to give you a different type.

  • OMG, really?!?! Thank you for that info, though it has shocked me I always like to know exactly what is going on. Nothing has really been explained, just literally that I had undercooked pork that gave me hep e & my liver will recover!!

    No wonder Dr's signed me off from work for a month - I thought Id of been back after a couple of weeks!! My sick note runs out on 1st March & at mo, to be quite honest, I really think I wont be up for it - even tho I only work in an office, it is quite demanding (car sales admin - the sales men get all the praise, but its me doing all the hard work behind the curtains!!lol!)

    The worst part is that I have also been working evenings & weekends building up my own dog grooming business (took my diploma 4yrs ago) & hoped to get the hysterectomy done with, then was gonna take the plunge & give up the day job. Have had to turn away so much work & let down so many regulars that I feel I am gonna be back to square one when I get better again. All my hard work - no holidays, working day & night for the last 4yrs has been for nothing!!!!!

    As you can see, I am a worker & so sitting around - mentally active, makes me feel like I am being lazy & its all in my mind! Surpisingly I actually do drink more than I should & so am VERY lucky to be on the mend I think!!! I have started drinking again, & keep thinking the itching is slowly coming back, I have pains etc. etc but putting it down to paranoia - do you think I am doing more damage?!?!

    I am a walking conundrum - though I inherited kidney disease from my dad who died when I was 4, my step dad was an alcoholic & so grew up with this & a dysfunctional home, so needless to say I drink too much!!!!

    I really do appreciate your help, thank you so much for your time.xx

  • OMG, the doctors didnt tell you to not drink!!??? NO ALCOHOL at all! alcohol kills liver cells every time you drink. That really is pouring fuel on the fire! You have to treat your liver with TLC from now on. You will need more tests at a later date to see if your liver has recovered fully. A FIbroscan is the best for finding scarring and fat.

    Your health has to be your main concern right now, forget your business and work.

  • No they didn't - but having had no alcohol while I was really poorly for a month, I'll assume they probably thought they didn't need to tell me!! And in my heart of hearts, I know what I am doing, but so much easier said than done - especially when my fella comes home from work every night & pours a beer - he drinks 10 cans a night. I have begged him to help me by not drinking & telling me not to when I ask for him to get me wine....

    Every morning I wake up feeling crap, thinking of what I can do rather than pouring a drink, but by 7pm.....I am so fed up..........!!!!

    Again thank you, please don't feel that you're knocking your head against the wall..... its sinking in..... I just need telling!!!!!!!!

  • You drinking right now is life threatening and of all the organs you dont want to fail the Liver is probably the top i think. Liver damage is painless and the liver only needs around 20% to do all its functions. Once it goes below 20% very horrible things happen, things that stopped me from sleeping for 3 months just thinking about them

    Veins in your stomach, intestines and throat become swollen because the blood cant pass through the liver and then they burst. Quite often liver damage isnt known until this happens, you can end up throwing up PINTS of blood and to make matters worse because the liver isnt able to produce clotting agents, its thin blood. So once it starts its very hard to stop this bleeding, yes people drown in their own blood with no warning.

    As the liver slowly starts to fail your belly fills up with liquids that bypass the clogged liver, this is painful and you will look 9 months pregnant, this liquid quite often gets infected and you can then die.

    A damaged liver leads to build up of toxins in the gut, this then goes into the blood and to the brain causing brain damage and a changes in your personality and if your not seen quick enough coma and death.

    Because the liver processes any drugs you take its very hard to manage pain, people can die in agony with all the above unpleasant symptoms and it can be very slow and doctors wont be able to do a thing to save you.

    Im hoping a bit of truth about the liver may shock you into sorting this out. Just last month a 20 year old girl came onto another forum im on, her previously healthy mum turned yellow suddenly and was rushed to hospital, she did have an internal bleed, this did stop eventually but the liver was so far gone it slowly started to shutdown, she was filling up with fluid, slowly losing her mind and in terrible pain for weeks. In the end the hospital took the treatment for the brain toxins away and let her go into a coma and die. from being apparently healthy to a month long unpleasant death. The added horror was that she knew she was dying and it was all self inflicted and she wouldnt ever see her grand children or her daughter married, she died depressed and in pain, she was in her mid 40s. We get around 1 story like this a week.

    You partner needs to go to the doctor ASAP and see what state his liver is in, 10 cans a night long term will certainly end up as above!!

    I used to be an unrepentant drinker a couple of times a week, i wouldn't touch the stuff with a barge pole now, also the liver isnt the only thing that it damages, but thats for another discussion.

  • I need to hear this, & it has scared me.... as much as sometimes I wonder why I bother with life..... that is the depression, helped along with the alcohol!!!!

    The scariest thing is, last night, I caught sight of my belly in the mirror (after drinking a bottle of wine)& thought oh my god I have put loads of weight back on. This morning I looked again, & though I have put all my weight back on but, compared to last night..........could my tummy of been swollen?????? It looked worse, like a balloon??? Oh jeez!!!

  • IF your liver numbers are normal, then its unlikely to be Ascites(thats its name).

    Your liver enzymes getting back to normal is only the first step, it means that further damage has stopped. Your liver now needs to repair those cells that were killed, this can take around 18months. So from right now NO ALCOHOL and eat a liver friendly diet. Im guessing the doctor did not know you were a drinker? With ALT as high as yours went, i would want to see a Hepatologist (liver specialist) and insist on a FIbroscan, the liver tests you have had don't measure scarring, they measure inflammation, you need to know what that inflammation has left behind. But its great that the inflammation has stopped, some unlucky people have prolonged inflammation and obviously that can lead to death.

    A bottle of wine is too much for a woman anyway, with a serious liver issue you are really playing with fire!

    Please get your partner to a doctor, he is in a great deal of danger!

    check this out, a good documentary, has some Fibroscan info too.

    youtube.com/watch? v=mVn2ByJvE7Y

  • Is a fibroscan done during an ultrasound? As I had one of those & they just said "that's ok!"

    Text fella to say please don't drink any more - reply "I need a drink tonight to come back here tomorrow!" Every time I try, he makes an excuse.

    Am in a bit of a mess now, as I am not eating properly either. Im not getting the best care here at home!!!! How do I get better?!?!?

  • no, a Fibroscan is a new technology that measures the livers stiffness, as the liver scars it becomes stiff, so the softer the better. Its good news your ultrasound is normal, but ultrasound is a poor tool for seeing the over all liver health. It should rule out cirrhosis, but it wont be able to see early scarring (Fibrosis) or early fat.

    Its a common thing that happens, people go to their doctor and get a good Liver Function Test, they then think its ok to drink. The problem with the Liver Function Test is that it only measures inflammation at the time the blood is drawn and it doesn't show past damage and it doesnt measure Fibrosis or fat.

    This is your wake up call, change your life now and you should be fine. Your partner really needs to see what he is doing to himself, get him to watch that video. Try and get him to go for a Liver Function Test to ease your minds and atleast prove there is no inflammation . explain to him people just like him who work hard and drink hard start turning yellow and going into liver failure everyday, he needs to make sure that its not going to be him. Remember liver damage is silent until its too late.

    You can get better by not drinking and eating fresh fruit and veg and take a vitamin pill without Iron, plenty of water obviously consult with your doctor about the best diet to be sure.

  • Well, ended up in meltdown by teatime as I have been trying since Monday to get help / answers from various NHS depts. I knew I needed help with the depression, rather than going down the "wine" route, & getting nowhere - surprise surprise. I have had more help, answers & understanding from this site than the so called "professional"!!

    I ended up breaking down on the phone to social services & she suggested I go to A&E to see the crisis team. The lady was so off as I had been drinking (not yesterday but generally throughout the last week) Luckily my GP intervened via fax with all my medical conditions & the lady suddenly changed her tune - they are going to try to organise respite / detox for next week at the hospital - as long as I register with the local TADS team.

    I got home at 8pm & my partner promised that he will no longer drink as long as I am not drinking - fair enough!!

    So all in all - you have been an absolute gem - I am hoping for a healthier happier future - though early days!! I am still apprehensive about all the results I have yet to get regarding my liver.

    Thank you so much for your time, dare I ask your story & how you know so much??xx

  • sorry i have only just seen this. My story.... i used to drink once or twice a week from around 18 to 30 usually about 6 pints a session,then in my 30's i took to drinking wine in the house 4 to 6 bottles a week usually. The wine was usually 2 bottles on a friday, wednesday and maybe a saturday. These days its 11 units a bottle so that 22unit sessions! im 39 now

    I went out last year during the world cup and had a couple of benders. after this i was very ill! Had 6 weeks off work, went for all kinds of tests, 3 sets of bloods, ultrasound and Fibroscan. Luckily my liver appears to be fine, just a little bit of fat over the normal found by Fibroscan. the Liver doctor thinks i had some Pancreatitis, I also had Gastritis and a generally annoyed GI tract. I didnt start to feel better until 5 months down the line!

    Thinking when I first got ill it was my Liver, i researched like mad and was shocked at what i found. Its the same pattern all the time, drinking too much even if its not everyday leads to fatty liver, then Alc Hep and then cirrhosis. the figure of 10-20% of drinkers get cirrhosis is often thrown out there, but I think nearly all will get it given time and amount of alcohol consumed. Some unlucky people get it far easier than others.

  • Blimey, sounds like you have been very unlucky!!

    I used to do the usual in my 20's - as you, out with the girls, for weekends that lasted at least 4 nights a week.

    Then hit 30, didn't go out as much, so took to drinking wine at home - & now 46, have definitely cut down to what I used to drink, but obviously still not enough!!

    When I went to see the consultant a couple of weeks ago, he said he didn't want me to go back to work until we have seen the results from the biopsy! I don't understand - are they thinking they are going to find something else?!?

    The bloods & ultrasound found I had the Hep E & the last bloods showed my numbers were down - what else are they looking at???

    xx

  • DO you have the actual numbers to post? Always get copies of your tests and scans. They dont do biopsys lightly because its invasive. I think it must be because your numbers were so high, ultrasound isnt good at seeing the early stages of damage, im guessing they are looking for scarring and trying to get an overall picture of your livers histology. Enzymes down is one thing the damage left behind is another.

    Its easy to fall into the trap of drinking wine at home and to me an open bottle was an empty bottle! I would have 2 on friday and maybe even during the week! The problem is as you get older your body is less able to handle it and fat builds up easier, but the double whammy is your tolerance goes up, so you end up drinking more, well units wise I did!

    It might be daunting right now, but I dont think you will ever be able to drink again, the Hep-e has really changed the game here, especially at 46. Our organs dont last forever, but as I said make dam sure your liver isnt the one to conk out.

  • The only figures I have are on my discharge letter - also I cant read his writing very well but aswell as the ALT & ALP, it says something about B.b?g?6?+ = 62 - do you know what that would be??

    Also -"Albumin + IN? (PT) NAD" & "Tx E NAC + ?VI" - any ideas what any of that means??

    Then it says that my ALT was less than 800 on being discharged on 18th Jan.

    Do you think that is why my GP intervened with the Crisis team??? All they wanted to do was fob me off to the NRP with counselling. However, I had told my GP I didn't want to be in the house if he is drinking as I know I will fall into that pattern again & I felt I needed a respite stay somewhere.

    As I said before, the bird came back with a totally different attitude telling me if I register with NRP they will have a bed somewhere for me within the week!!!!!!

    Gulp! Seriously - its that bad is it???? No more drinking!?!!?

    In the long run, perhaps the Hep E is a good thing if I already have damage from the alcohol - it would be my "everything happens for a reason"! You can never understand why you have been dealt crap when its happening but when you come out of it, life seems better, if you get me?!?!

  • When I have blood tests and scans I go to the receptionist at the doctors and ask for a print out.

    Just to illustrate your bad numbers, these some of mine just after I stopped drinking;

    The normal ranges are in brackets

    GGT=19

    ALT= 20 IU/L (0-41) YES 20, YOURS IS SKY HIGH, even at 800

    ALP = 55 U/L (30-130)

    ALBUMIN= 49 G/L (35-50) protein produced by the liver, higher is better

    creatine = 79 umol/l used to measure kidney function, lower is better

    billirubin = 13 umol/l (1-21) Liver breaks this down, high makes people turn yellow, low is better.

    I cant make head nor tale of most of your doctors writing, but IN maybe INR which is the amount of time your blood takes to clot, a malfunctioning Liver has a high INR because the blood wont clot.

    I think your Doctor has intervened because you must be right away from alcohol immediately, your liver has had a very sharp shock from the Hep-e. Its difficult to tell how your liver was before this, but no fat on the ultrasound is good news. from 4000+ to 800 means your going in the right direction, but there is a long road of many blood tests and scans ahead.

  • From what you have said & "googeling" I have works out my Bilirubin = 62 & the rest is stuff they gave me intravenously.

    I was very yellow when I went into hospital!!!

    Well, I still haven't heard from any NHS with help for depression, but weirdly I am feeling quite well today - mentally & physically. Though I have to sit down after doing the washing or making the bed or whatever, I can feel that I have weakness in my muscles.

    I am now going to take my dogs out on my own - wish me luck!LOL!

    x

  • Just share your journey and I'll be glad to listen. I'm getting depressed to but I'm really confused if it's the disease or just my life. I just don't seem to be satisfied...

  • Have you looked for help about your depression, it is natural for a "disease" to cause depression, & understandably so! Its frustrating to get the right help - as I found out this week - but start with your GP - mine was a god send yesterday!xx

  • You are potentially putting yourself and your liver at great risk continuing to drink alcohol whilst your liver is so poorly and struggling already.

    ALT of that magnitude shows your liver was/is extremely inflamed - just for example my hubby who is awaiting transplant had an ALT of 99 last March and his hepatologist was concerned enough to immediately start him on steroids to try and stop the inflammation (auto-immune in his case) & eventually get him assessed and listed for transplant.

    Your liver needs time to get over this attack of Hep E (not that I am an expert on that) but continuing to give it lots of toxins to deal with whilst it is already in a very poorly state is potentially going to lead to serious long term damage. If you are drinking and some of the liver symptoms are coming back it may well be real and not just your imagination.............. you know what you need to do about it!

    I agree with Ralph in that unless your hysterectomy is absolutely needed immediately then a delay probably would be the best answer, give your body time to properly recover from the one condition before it has to try and recover from pretty major surgery. Surgery and post-op recovery will probably involve lots of sedation, anaesthetics, pain control etc and these too are all strong toxins which an already struggling liver might have trouble processing and could also lead to damage.

    Alcohol is also not good for your kidneys as they too have to struggle and cope with the toxins of it and as a depressant drug in its own right it seems rather silly to be taking anti-depressant medication then hitting yourself with a major depressant in the booze.

    As regards work you need more time off, you need to clear this from your system, an extension to your sick line is most likely required.

    Anyway, I have said my part, you've got a chance to sort yourself out here, sadly my hubby and others on this site don't/haven't had that opportunity. Give your liver a break and it should heal.

  • Hiya, thank you for your response, totally appreciate everything you say.

    I must admit, although I know I am on self destruct, but as the dr said that my numbers were now back to normal, I assumed all was back to normal & was was recovered.

    I could tell you everything you need to know about my kidney disease, Alport Syndrome, which is rare in itself, but liver & hep e - not a clue, so I am pretty ignorant - & thank you both for explaining more to me than my dr has.

    I need the kick up the backside to get myself sorted, its hard when I have been inflicted with kidney disease, depression & then needing a drink..............honestly, it is a fight every night to NOT have a drink!!! Especially when I haven't got the energy to do other things that I enjoy!!!

    Again, thank you both for taking the time.xx

  • Hi ciboney, I have alcoholic liver cirrhosis, I no longer drink, been sober for two years. Believe me I know what its like trying to stop but stick with it. You will feel so much better, physically and mentally. It will get easier. Take one day at a time and try and keep your mind busy. Reward yourself (not with a drink!) You can do it. All the best.

  • Thank you, after everything I have learned on here I know I have the strength to do this! I have been a fighter all my life, dragging myself out the gutter, when my brother has ended up a full blown alcoholic & drug addict, in & out of prison - with our childhood I could have followed his path!! He never even got the kidney disease I inherited from our dad & I bet he hasn't had liver problems - YET!

    Though for some time, prior to this illness I have been feeling exhausted & "whats the point, my life has been just one long battle & I want out" So, as they say everything happens for a reason, though I cant see it at the mo, perhaps this push to cry out for help, I may come out happier & feel a reason to continue!

    Can your cirrhosis recover???

    xx

  • No cirrhosis can't generally be reversed, although you can have quite substantial damage and your liver can still function. My condition is being managed and i'm now fit and healthy. I count myself lucky lots of others, some on here, aren't so. It WILL get better for you, you've just got to keep on fighting. I was a full blown alcoholic, I drank every day from morning till night, at my worse 18+ cans a day. I couldn't see myself coping without it, it had such a grip on me. But now I look back and laugh at how I let it get to me like that. Things will turn around and you've taken the first step coming on here. There's always plenty of people to talk to on here if you need it.

  • jeepers thats alot of beer! i would have that in about a week! but alcohol can grip you even in smallish amounts. I was an alcoholic drinking 40,50 or 60 units a week, it took 6 months to clear it from my system.

  • Yes it can take a long time to recover. Nutritionally I was a mess, where you just drink and don't hardly eat your body is deprived of a lot of things. I was on vitamin b and thiamin for about a year after as well as multi vitamins. You are correct, you can become dependent on smaller amounts of alcohol as well, its an easy trap to fall into.

  • Hi, i won't repeat all the info and guidance that everyone else has written because it was all spot on and you have heard it I hope. It sounds like you could really use some support through the process of strying to cut alcohol out of your life. I know a lot of people find AA difficult for a variety of reasons but the support structure is excellent. If you can't stomach the "submit to a higher power" element of it (my mum certainly couldn't) then i would recommend you get in touch with Addaction addaction.org.uk/. They are a charity located across the country and have a huge variety of services, one-on-one counselling, group therapy, rehab, the works. As you have this time off to heal you have a window to properly throw yourself into trying to kick this. I know that the Addaction counselling also helped my Mum work through lots of the underlying emotional trauma that led to her drinking (which almost killed her). They don't just treat the drinking but the cause too. They were kind, pragmatic, understanding and non-judgemental. Call them. They saved my Mum's life.

  • Hiya, I looked at the website & as I am in the back end of nowhere (Norfolk!) there is no group nearby. But I am going to register with TADS today, our local government alcohol help & hopefully because of all my ailments - none brought on by myself or alcohol, I am going in hospital for respite / detox next week. As I said to Ralph2014, the lady came in with her judgemental notion.......which is so wrong as even she admitted that alcohol is a means to an end, to help with our problems but she was just pushing me to TADS with no other help, until my GP stepped in! Unbelievable the personality transformation, I don't actually know what my GP put in her fax - but it did the job!

    So all in all, with the amazing support I have had & hope to get from you "strangers" on here I so hope to be on the road to recovery - I did not even want to smell alcohol last night!!!!

    You have all been so amazingly kind just to give me some time & understanding to my current plight!

    Love you all.xxx

  • Sorry to hear that you have had judgemental responses as they don't help anything and only increase the cycle of depression and shame that alcohol can cause. I hope that there are also people that will be more positive in their support and wish you all the best with getting the right treatment and ultimately getting better.

  • Yes, you are totally right, I ended up bursting in tears in frustration as she was just not getting it. Then she couldn't understand what was wrong with me!!!!!

    Well, I have just emailed Tads!!!!

    xx

  • The first 6 months are the worst, your body is screaming out for alcohol, after this the fog lifts and you realise it did have quite a hold of you. I used to drink 2/3 times a week and I would do dry January etc, little did i know this can have an affect on your health too.

    It was an easy decision to stop, the health bomb that is Cirrhosis scared the $*** out of me ! There was a time when i couldnt imagine going fishing or on holiday without a fair amount of alcohol being around. Now I cant imagine drinking again, I also love the simple things in life, like the birds singing and frosty and crisp mornings, sounds corny but once the fog lifts and your health is better you will love it!

    I remain very concerned about your partner, there is a guy called hightower on this forum, he drank 15 cans a day and got to end stage cirrhosis in 3 years. Try some ways to get your partner to doctors, no sex or something, anything to save his health, its a silent disaster in the making that will come to a hideous conclusion one day.

  • I know exactly where you are coming from! Any days off we have, we generally end up in the pub for a couple.

    And you are so right about the "simple things" - I have to sleep with the windows open - womens problems!LOL!, & woke up this morning to hear the birds singing at 5am. I am just back from taking my dogs out - effin cold, but great to see them enjoying themselves. Believe me, I do love the simple things, especially now the nights are drawing out, I love hearing the birds in the evening, as it means warmer weather is on its way!

    So we are now going out for the day - & we are not going to end up in a pub!!!! PROMISE!xx

  • i was diagnosed with Hep.E a month ago & got infection on top of this. been signed off for month(over 2 months know!) as still showing symptoms. sympathise with frustration issue as i have been trying to get Occupational Health to give my Hep B. boaster(NHS worker-found out boaster was due year ago!), work looking into it as well but its like pulling teeth! guess you have to keep trying gastro, are you well enough to go to them?

  • I haven't worked since 1st week in January.... feel so weak still. Trying to build my muscles up - been knitting & that even pulls on my shoulders, so now signed off for another month. Had a dream that I was struggling to stay awake at work last night - so it is obviously playing on my mind!!

    See gastro on Thursday & they happy that my numbers are back to normal - tho I forgot to ask what they were. So I am going ahead with my hysterectomy tomorrow.

    I think most things with NHS is like pulling teeth - I understand your frustration!!!

  • Try not to worry about work, your health is much more important

  • well, I had the hysterectomy a week ago ......and the exhaustion continues!!! I asked for my bloods results post op, they said I have to ask GP!!

  • As I said before - I tried picking up my knitting to build my muscles back up, but stopped again as the pain in my shoulder / right arm was getting worse.

    It hasn't got any better & I have now noticed a lump / swell where my collar bone meets the shoulder.

    Anybody got any ideas?? Will this be linked to the liver damage I suffered??

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