Living in constant fear and shame - British Liver Trust

British Liver Trust
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Living in constant fear and shame

I guess you know when something isnt right in your body but what im going through is beyond words .i think i must have very advanced chirrhosiss caused through alcohol cinsumption.i had my first symptoms 11 months ago when my bowels went wrong .i had colonoscopy that was normal then more symptoms came blotchy hand .red dot things on skin .itching .weakness .pain in liver also enlarged liver on ultra sound scan .im terrified as i know all this points to decompensated liver disease . My breathing is affected now last night i woke up heart seemed very stressed .i feel like its too late and im in a bad way .i was stupid how could i not see i was damaging my liver years ago now im living in fear of the bad things to come .i feel ashamed of facing the medical people when the truth is revealed .and im terryfied of dying .

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Darling, pleased don,t feel embarrrassed you are by no means alone, and in fact alcohol and drug problems are more common in the Doctor, nurse etc profession than you would realise. With the breathing , I also get this problem which may be due to your enlarged liver and maybe helped by lying on your other side. If your bowels are still an issue than have a check that you are drinking enough and well hydrated. Please make a doctors appointment and tell them what you,ve told us and get sorted out. If the Doctor does not seem sympathetic then change Doctors. When I was a child ( and docs still did home visits ) our GP had tobe driven around by his wife particularly at night as he was too drunk to drive often!!. Take care and make that appointment, perhaps a good idea to write your questions down before hand and maybe if your comfortable take someone with you. 😊😊

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Thanks i know your right but how do you explain you think you exceeded safe drinking limits and didnt realise what you were doing ?.makes you look so stupid but thats the least of my worries if i have destroyed my liver .

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Hi Countrywalks,

I don't know where you live or what your local doctors are like, but I can tell you that the basically the only thing my husband's doctors told him and they did this while he was in the hospital in liver and kidney failure, was he would have to quit drinking if he wanted to live. Luckily for all of us, he decided to quit then and there and is still sober 3 years later and we just had his latest 6 month follow up visit. I would have liked if one of his doctors over the years, especially, once he was showing liver issues, had been that blunt - but oh well.

Try not to worry - I don't think you will need to "explain" anything, just go on from here, get the help you need and do the necessary things that will improve your condition.

Best wishes,

Mary

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Thanks mary did your husband have chirrhossiss or something else ? I feel so stupid i was drinking wine sometines cider for maybe 20 yrs so its easy to think ive done bad damage that cant be sorted now my healths not good .i just feel so helpless i cant go back in time see how stupid drinking is and how it destroys lifes . Judy x

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Hi Judy,

Yes, husband was sent to hospital in liver and kidney failure in Nov of 2015 due, it was decided, to alcohol. And yup, he was a drinker for decades. We can't change our pasts and I don't think you should feel stupid for any reason. As my husband's liver doctor said a relatively small percentage of drinkers develop cirrhosis.

You have gotten some really good replies from people here that are more in depth than I can be.

You really need to find out if you have cirrhosis and if you do the doctors will do their best to determine if there is a cause other than alcohol - they, I think, will check for hepatitis and possibly autoimmune diseases and other things. It is also possible that what you are suffering from is not liver related so make sure you go to all your doctor appointments with an open mind.

Wishing only the best for you,

Mary

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Oh my love, please you must not feel ashamed. Alcohol can be a terrible thing for some of us. If you can be honest with your doctor then please do. You must see someone to help you. The quicker you can get help the better. All is not lost. I was like you, and I did need a transplant but my life is transformed. Your liver might not be so bad but I think you must go and see someone. My experience was that they weren’t judgemental merely kind and helpful.

Pm me if you wish

Isabelle xx

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Spot on Isabelle. Well said.

Miles

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Hi Countrywalks and welcome to the forum. Let's slow this train right down so we can chat rationally. Now I respect your scared and clearly having extreme anxiety from what you have seen on the internet.

I am not a doctor and wont give you medical advice or diagnosis but, I can help you understand thing a bit better. That all being said you dont have decompensated cirrhosis. Decompensated cirrhosis is not by any means something that one thinks or simply "suspects" they have. Decompensation cannot be missed on blood work, it cannot be missed on ultrasounds and it cannot be missed visually on a clinical level. Your problem (and pardon me if my assumptions are wrong) is that your googling symptoms of liver disease and your applying them to yourself. Members of this forum, its administrators and doctors will tell you to NOT do that. The reason is because although there is some great literature and medical journals out there for people to access, most of what comes up is all "cirrhosis this and cirrhosis that". So far you have said that your medical testing has shown an enlarged liver. Thats not at all conclusive of cirrhosis or liver disease at all for that matter.

Further the liver isnt enlarged in alcoholic decompensation it is usually shrunken, become morphologically mis-shapen, has a lobar size redistribution from the right lobe to the left lobe and especially hypertrophy of the caudate and or the quadrate lobe, is heterogenous in texture, nodular, and lobular edged. All of this would also definitely be found with subsequent portal hypertension with the usual varices veins and likely ascites. Also likely to be accompanied by recanalization of the para umbilical veins that have reopened and are acting as a shunt to redistribute the blood flow from the portal vein to the vena cava. Your blood work would be deranged.

That's the short list. Now I didnt explain all those terms for now purposely. Truthfully you have not likely heard of almost all of them. On that assumption I can say that I'm not allowed to give medical advice even though I do know and understand those terms so really then how could you possibly be diagnosing yourself not knowing them? You cant. My friend if they are not terms you have heard your doctor say around you or toward the medical condition you are trying to sort out then you dont have decompensated cirrhosis. More so if you weren't on meds to treat any of the issues of decompensation youd be in a hospital right now anyways and you are not so.

I hope that has made you relax some. As for what is wrong causing your liver to be enlarged you will need to follow up with your doctor on that and get some answers. Like I said nothing you have reported her is even conclusive of liver disease. If it does turn out to be liver disease and it caused by alcohol than the great news is that quitting drinking will stop the progression of any further damage and improve your livers function. It may also be very possible to see a regression in the damage. Please I do certainly hope that you are not this panicked about having cirrhosis and are still currently drinking???!

Sorry for the long novel. Let me say this very boldly. Cirrhosis is not a death sentence! Some of the members on here have had liver transplants from having decompensated cirrhosis and they are some of the strongest, most active and lively people on here. We are here to help so dont be afraid to ask questions and to be open and honest. Noone is judging you here. But from a person who has struggled with anxiety and panic my whole life I'm telling you to stay off the Google box for now. Trust me.

Take care and keep us updated

-Phoenix

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Btw I forgot to mention a very important fact. Alcoholic Cirrhosis only happens in about 10 to 20 percent of long term heavy drinkers. It absolutely does not happen to the other 80 to 90 percent of people who drink heavily. It also is typically quite indolent. Meaning it takes years to progress to that point often decades of heavy boozing

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Bloody marvellous response - spot on !

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I second that BSA-3. Fantastic answer from PhoenixPalazzo!

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I was one of those 10 to 20% people.

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Yup, me too !

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Yes you are and you aren't just assuming you are because of one arbitrary symptom. That's my point.

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Its not just one symptom i have sevral things going on the spider nevi .the liver pain.the flushing hands .constant abdominal pain .weakness .accelerated heartrate breathlessness . I drank for about 22 yrs thats a long time for a woman we have smaller livers .and yes i wish i hadnt now .i was ignorant didnt realise the risks until now .

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Well as I said above maybe you do have liver disease. You certainly and definitely are not in decomp. Spider Nevi isnt a symptom in everyone and alot of times when people show a doctor what they think is spider nevi a doctor will confirm it is not. Palmer Eurythmia is also not a symptom everyone with liver disease has. Most importantly has a doctor told you that you have these 2 things?

Abdominal pain, weakness, accelerated heart rate, breathlessness are symptoms of a myriad of different diseases and ailments including anxiety disorders. I have advanced liver disease and I dont have any of these symptoms.

Do you currently drink? What are your blood work tests like?

Also the reason women are more susceptible to liver disease from alcohol has nothing to do with the livers size.

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Yes i guess so . I showed the dr he said he was not sure as had not seen that many patients with chirrochiss due to being a small rural practice .no i dont drink anymore not drank for 13 months .just before i got ill .decided to try and loose weight lower blood pressure .then this lot crops up.sounds crazy but if it were decimpensated liver disease i would not get much help as it would be too far gone wouldnt it ?. I guess the safe limits are have none .i suppose you can have the disease for yrs not know until its too late .

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If you have stopped drinking you would never get to decompensated if you weren't already. Even alot of people who were decompensated when they stopped drinking returned to compensated. But the key was and is absolutley no drinking

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Well i dont know how the disease works i thought it progressed if you drink or not at different rates ?.i got the idea if i have chirrociss its decompensated because of the bowel disorder which it said is a complication that causes bacterial translocation in advanced liver chirrhossiss.the bowel motility changes becomes irregular as mine has done and the stools become deranged due too the bacteria involved .

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That being said there has been no diagnosis that you even have liver disease at all. What you do need to do without question is get to a doctor that can help you figure out what is wrong. That may require going out of town

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Coolio 👍

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I remember my hospital admittance report coming back saying 'deranged LFTs' which I thought was a quite comical way of putting it! 😕

I'm one of the 20% too.

But still here getting on with the business of life

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I had never heard the term deranged bloods until I joined this forum. We dont use the term in Canada. When I first saw someone say it I pictured a cartoon blood cell in a straight jacket locked in an asylum. Lmao

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Please don't feel ashamed. We all contracted Chirrosis in different ways. I felt ashamed of mine as it is caused by a fatty liver which I didn't know I had until it developed into Chirrosis. People kept telling me I should be more ashamed. I lost my job because of it but now i'm away from that awful job and spending time with supportive friends and family and I feel so much better for it. No-one should make you feel ashamed least of all yourself. The doctors and Consultants are so kind. Just be honest and say what you want to say and ask questions. Good luck with everything.

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Yhamilton,

The people who treated you that way should be ashamed of themselves. How dare someone judge someone who unknowingly ended up with a disease. People like to treat others as if you chose to do it to yourself. Some are born with liver disease some get it from arguably poor choices that most of us DO NOT know we are making. I'm glad to hear you are away from that job. It's amazing how those who judge are usually quite " sinful" types of people in their own behaviour. " You should be ashamed you got cirrhosis from drinking". Hmm should I?Maybe that person should be ashamed that they are absent in their kids lives or stay late at the office to have affairs on their desk or snort lines of cocaine or simpler things like cutting people off on the highway or not paying for items that noone notices didnt scan at the super market. People who shame others is because they are using a simple psychological distraction method called projection. They like to put the things they hate about themselves and the "sins" they commit on to others to distract attention from their own behaviour. These hypocrites are everywhere. Anti abortion advocates who molest children, religious fanatics who oppose gay rights and marriage yet are closet homosexuals themselves. The list is never ending. You ignore them. Let them stew in their own juices. You rise love. You be the best you can be for you. Noone is anymore deserving to breathe this earth's air or to live happy and free in its lands than any other person. Free will and the right to free will is universal. Anyone who says or acts otherwise renounces that right in my books.

Keep your head up😊

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Hi - sorry I've not had a chance to catch up on the forum until now. You are so right but it took me a good while to realise. I am a great believer of treating others how you would wish to be treated yourself. I got worn down a bit but I've stayed true to that throughout. Don't let others putting us down affect us and we should keep positive and do things that make us happy and surround ourselves with supportive friends and family. Important things are now health, love, family and friends. X

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Oh my heart goes out to you. I was much the same as you described and felt totally ashamed of myself and it took untill I was nearly dying to go to my doctor who straight away sent me to hospital. And diagnosed cirrhosis. Like your saying, why don't we listen to our bodies and doctors when they tell us we need to stop!! It's crazy what we put our bodies through. I've been sober for over a year and I'm loving my life again. Do you have family/friends who support you? Please go to your doctor's ASAP and yes you will probably feel embarrassed but it will save your life. Good luck🍀

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You have nothing to be ashamed of! If you had a broken leg would you feel like this? Alcohol dependence is an illness. Im sure no one sets out to become addicted? My Dad was no drinker, he sometimes had a shandy lol. Nearly half of his siblings were alcohol dependents. There is a genetic link sometimes. My brother and I both just stopped, prefer a brew . My daughter was 19 before she even tried alcohol. Didnt like it much now she has zero. There is no class distinction either as to who is alcohol dependent. Royalty or paupers. It brilliant you have now stopped and I have seen so many stories on here of people who were expecting to die. The hospitals do some amazing things, Feel proud you have stopped, I am full of admiration for everyone who manages it.

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There is some good advice here, but it’s quite natural to feel negative emotions about getting any life-threatening disease whether or not it is in some way ‘your fault’. I do: shame, anger, guilt, powerlessness, fear amongst others. And there is a very good reason why people search the Net for answers and info, which is that almost all the “official” published staff is too general, anodyne and simplistic to be of any real use. Whilst clinicians either lack the expertise or willingness to provide specific information on risks, actual outcomes ar deal with psychological issues. I am hoping that these points will be addressed once I get to meet a transplant team, but suspect they will take the accepted and ‘normal’ conventional medical apprach of starting from the assumption that patients are always better off alive than dead and will put up with pretty much anything for another few months of life. That may be true of some or even all peopl, but it’s not my view. And neither is being treated like a malfunctioning machine who can be repaired by fixing one part at a time.

If you don’t think that’s a fair reflection of how the NHS works, then consider why leading doctors think it’s acceptable to force sick people to travel miles away from their homes, friends and families to attend a few mega-hospitals, are left waiting hours, weeks and months for initial appointments, and then longer for diagnostic tests before getting any actual treatment. Or why all the money goes on a few prestigious or glamorous treatments like heart transplants whilst there’s virtually no funding for mental health, Alzheimers, chronic pain or research into cures for liver disease. The liver is the one organ that can regenerate. But is there massive research into ways to exploit this capability? No. There’s “stop drinking”, a few drugs to moderate some symptoms and transplants and that’s it!

Maybe you are happy to just trust the Doctors, but I’m a scientist by training and temperament. I want hard facts and figures, clear information on outcomes, side effects and risks. And to be treated as ain individual person. Sorry about the rant, but I think it would be more helpful if this forum had a bit more edge and included the views of those who’d decided not to go of a transplant or been refused one.

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Wow Dogschance, that's quite a view, and it's a shame that it's not taken by many more people in the UK! But us Brits tend to be a patient, accepting lot, who don't like to rock the boat (maybe 'patient' and 'accepting' should be prefaced by 'too...')? Just look at our queuing abilities - we're the envy of the world! Sadly we're in no position to question the treatment we're given by the 'experts' (unless you have private health insurance), and any attempts to rock said boat can include exemption from all and any queues (sorry - that should be 'waiting lists'). So it's all down to accepting what little we're given, and having to be grateful for it? But I'm sure we can rest assured that to be given so little, we're also keeping alive/saving millions of third world countries, so that they can channel their meagre funds on the likes of more improved space projects, self defence systems,......

Good luck with your treatment, however little that is....?

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Not sure what you are trying to say here, but if its that the choice is between funding the NHS properly and providing small amounts of aid to the world’s poorest people (NOT their governments only a handful of which have any kind of space programme - arms spending is different because of course we don’t sell arms to anybody except nice people!) then you are completely wrong. And ignoring the fact that we actually undermine developing country healthcare systems by stealing their medics. Are you saying people in other countries don’t deserve healthcare? Because if you are that not only strikes me as racist, but morally wrong and the 1st step onto a very slippery slope which ends with arguing that poor people (or those with “self-inflicted” conditions like addiction or obesity) here don’t deserve healthcare either.

There is only one reason the NHS cannot cope with demand and doesn’t properly fund R&D into liver disease and that is that the Tories have deliberately set out to undermine it be selling chunks off, “reforming” it at huge cost in management time and consultancy fees, underpaying staff, failing to recruit/train/retain them, and not providing the money to maintain and upgrade builings and equipment. Choosing instead to give away tax breaks to their rich supporters.

Be interesting to know what % of the staff, drugs and equipment used in liver transplants come front EU countries or places we have EU-negotiated trade deals with that will be adversely affected by Brexiit.

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No no no Dogschance, you've got me quite wrong here! I'm not against helping ANYONE - within reason - and if the aid budget were to be handled correctly, it would do what it's supposed to do! Instead, it's being totally mis-handled, is being abused by receptors, and much of it is being fed into various nefarious schemes to benefit corrupt governments! I believe the £14 billion budget we provide could/should be helping far more of the people who actually NEED it?

dailymail.co.uk/news/articl...

As for '...stealing (their) medics.' from other countries...? Are you implying that they are being enslaved in some way, because I was of the opinion that they came here to better themselves - purely from personal choice?

I don't believe I mentioned racism at any point in my comments, either by religion, colour nor creed? It seems that you apply 'race' to mean anyone other than in inhabitant of the UK? Or is it anyone other than someone in the next county,...town,...street,...house? I'm not sure on your point here? And indeed, I was in the act - purely voluntarily - for many years prior to my own ill health, in helping those who suffer with what you call a 'self-inflicted' condition - your words, not mine?

As for the 'handling of the NHS by the government, I'm behind you 100%! And that's not just regarding liver conditions - it's across the board? I suffer with lymphoedema, about which little seems to be known, and about which even less is being done!

The only common theme that runs through both of our arguments, seems to be governments - corruption of - and I actively spoil my votes in defiance of supporting ANY of them!

I believe this site - Health Unlocked - is a medical forum, and I would prefer in future to continue to contribute in the support of others with such conditions? May I suggest that in order for you to continue any further political observations, that you go to:

order-order.com

Have a good, healthy life....

SUBJECT CLOSED ON MY PART.

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Yeah, you can ignore him. He's a bleeding heart socialist who has the mentality of a 5 year old

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What the hell is wrong with you?

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Hi Countrywalks

The medical people are not judgemental so, don't feel ashamed. If you ask questions you will get an answer even if it's not the answer you necessarily want to hear.

The way forward for you, in my opinion, is too face facts and don't judge yourself. What's done is done and forgive yourself for the past.

May I suggest you see your doctor and get the medical help and advice you need.

Best wishes

John

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I feel I am not that far behind you, but remember, where there is life, there is hope. I take it one day,one hour and one second at a time. I don't blame and I don't shame myself or anyone else. Savor what is left and remember the good tmes. We are only human.

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Hi Countrywalks

I am really pleased to read some of the brilliant supportive replies to your post.

If you would like to talk the helpline is open as usual tomorrow 10am to 14.45 on 0800 652 7330

Take care and remember you are not alone.

Trust1

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Aaaw please go & get help it's never too late x

I had trouble lying on my left side too, I felt as though I was crushing my heart lying that way......I was!! My liver was that badly damaged from drinking too much over the years I was "crushing" all my organs till they couldn't take anymore & I collapsed.

The hospital,Doctors & staff were all lovely & not once was I judged over my drinking.

They're there to help & will understand xx

Please get help lovely before it's too late & you end up in A&E.

You can get through this x stay strong x Take care lovely

Lisa xx

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Do not ever, ever feel ashamed of living with the DISEASE that is alcoholism? if any individual says otherwise then, in my opinion, are misinformed, arrogant and uneducated fools? I dare anyone to walk in our shoes for a say? I hope that you have sought out medical advice and you are moving forward. I am almost 20 months sober and 8 months transplanted. Life after transplant is amazing, really! My recovery has been quite incredible too. Best wishes, Leigh

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