Understanding liver disease - British Liver Trust

British Liver Trust

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Understanding liver disease

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It's a fact that no one can fully understand how someone feels with liver disease. There not having the symptoms. No docs understand. It's so frustrating. It's about time things changed. No matter what we are still human beings. Suffering. Its just not fair. We was fit and healthy before like most functioning adults

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Hi chriss998,

Im sorry to hear you have had such a bad experiance. I have to say though that everyone i have dealt with since being diagnosed nearly 7 years ago with autoimmune liver disease has been great,the nhs has been fantastic through it all. Its not nice to suffer from and no, people who don't have a chronic illness dont necessarily understand our pain physically/mental. Maybe talk to your gp and see if there is some counselling you can get.

Take care

Angela x

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Hi sorry to hear about your condition. I've been to gp dozens of times. They just run bloods. They all come back fine. So they do nothing else. It's the feeling unwell n tiredness and weak limbs. No muscle loss just feel weak when I walk and when I pick stuff up I get a weakness feeling. There no amount of talking going to stop those symptoms.. I can't even work anymore as I Don know if I'm going to feel well enough x

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The talking wont stop the symptoms but may help you to deal with them mentally. I had to give up working 2 years ago and i still miss it. The fatigue,pain and nausea is just a part of what i deal with on a daily basis and tried to keep working but after 5 years of hell. I had to give it up not just for myself but the people who love me. So if not working is what you feel you need to do then thats what you do.

The thing with the gp not doing anything, when bloods are all normal then they don't really know what to do as dont know what will be causing your issues. If you have had liver issues before are you not under a consultant for it?

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I can't walk right. Legs go like jelly trying to get downstairs. My partner left me as didn't understand the illness. So I'm on my own dealing with this dreadful thing. I went to see consultant on 16th Jan. I told him the issues. He dismissed it. Looked at bloods n said see u in 6 months. No one seems bother. Or do anything. Its having a Hugh affect on me. I need real help..

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I can't work as my legs are like 2 pieces of jelly. Can't work in that state. Got all on going to shops. Living a nightmare

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I think you need to be saying to your gp about getting some help to accept what is wrong with you. Unfortunately liver disease is not nice and there is no miracle cure for it.

Im sorry to hear that your partner left but they are not worth the upset . Anybody that leaves someone because of ill health then is not someone you want to be with.

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Well she is bound to leave when she went with me to see the liver nurse 4 months in after diagnosis. One of the questions she asked is will Christopher be ill forever now! She replied good god no!!!! Here I am 12 mths in and still unwell. Initially the liver said 6 or 7 months. Then went onto say everyone different some take longer some 8 mth some 10 some 12 mth. And when I rang her saying I wasn't feeling great. She said well everything's going in right direction and some take that bit longer. Even then mentioned 2 years. How can u make sence of that. My partner thought I was putting it on as the liver nurse said Christopher should be back at work now to her!! Making her think I'm making it up more. Talk about confusing.

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I dont know how long it will take you to feel better if doing eveything they have said you need to do. My liver disease dosent improve so won't get better. Had to just accept how i struggle and live my life adapting it to work round my good/bad days . My husband has struggled and at times feels he has lost the person i was when first got together. We are still learning how to live with it and the prospects of it getting worse.

I hope you can learn to accept and maybe find some peace.

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My hubby was diagnosed in April 2012 with cirrhosis due to Auto Immune liver issues. He presented with decompensated issues - bleeding from varices. Unfortunately he had never been able to go back to work - he was previously a welder in heavy engineering now he struggles to keep his hands from shaking sometimes, can't concentrate for long, gets really fatigued and confused occasionally. He can no longer drive and the life he wanted to live has sadly disappeared. After a couple of years he saw a clinical psychologist who determined that hubby had an 'adjustment depression' owing to this sudden diagnosis of liver disease and the massive impact it has had on his life.

I think you have to go through almost a mourning period to readjust to the new life, yes it's not the life you desired or wanted for yourself but it's what you've got so you have to live this new life to the fullest.

All this time later, hubby still hasn't 100% come to terms with this new reality and every so often he'll have really low spells but we talk and we try to live each good day as it presents. We have difficulty planning ahead as we never know how hubby will be from one day to the next but we now go away in our caravan, we try to absolutely make the most of good days.

I only married hubby after his diagnosis so we go through this day by day together and it's a pity your girl walked as it must be terrible trying to manage yourself with it.

Fingers crossed you can start healing, both physically and mentally. Do you know what has been an absolute god send to my hubby? A stray cat that turned up on our door step a week or so after hubby got out of hospital. She moved in and is now hubbies wee guardian angel, she sits with him when he's alone, goes to bed by him when he's needing bed rest and her purrs and love have lifted him no end. She has become our Puss Puss and 8 years down the line still here, comes away in the caravan with us and gives hubby a boost every single day. Hubby was previously very much a dog man but this little cat has lifted him from some pretty dark days.

Hoping you turn the corner,

Best wishes,

Katie

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Hi Katie that makes my symptoms tame. I've go compensated cirrhosis. My reading was 12 7 on fibroscan. 12.5 is cirrhosis. But I have a grade 3 fatty liver. The worst one. Not sure if I can recover from either. Liver nurse did say to my ex partner once. There no reason Christopher can't lead a normal life. With 10. 20 30 years life. But if that the case why am I still ill 12 mths in. That's the bit what's confusing. And I can't imagine been your husband. That terrible. Why can't he get a liver transplant. If things are that bad.. What a bloody world we live in. No one should suffer x

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Hubby is too well for transplant - his condition is now considered compensated and stable. He was listed in 2014 but after 10 months delisted because his bloods stabilized. He is doing well in the grand scheme of things. No jaundice, no longer any varices, no ascites. Yes he has ongoing issues but these are mainly lifestyle related and they don't do transplant to improve lifestyle as such, it is a life saving treatment option only as they can't even guarantee that transplant will improve the other issues. He has no pain and just gets on with life, living it the best he can and in time you too will have to try and make that adjustment. You have to live the life you have got the best you can live it.

You can make changes that might improve the fatty liver situation and even the mild cirrhosis but it will perhaps take time. My hubbies doctors have patients on there books who have had a diagnosis of cirrhosis for 20+ years without ever reaching the stage of needing transplant.

Hubby isn't so much as suffering, he's living a sort of wasted life he feels and the worst of it is it could not have been predicted or prevented or even treated now to improve. It is what it is.

Katie

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Katie

You are so much better at explaining than i am.

I totally relate to the mourning stage and still do miss the person i was. I love the story about your cat for me it was our 2nd dog, we got him a few months after i was diagnosed. When i went on long term sick he was the only thing that made me smile. I have said many times since that he was a big part of keeping me from giving up.

Wishing you and your husband the best xx

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It is like a grief, you are mourning your past life or the one you've lost. You have to work through the stages of grief to actually come to terms with it and move on to a brighter future albeit not perhaps the one you planned or hoped for.

webmd.com/balance/normal-gr...

I think the problem is more that people still don't understand the full impact of alcohol on the liver not so much that doctors don't understand the illness. All they can do is treat the symptoms of the disease. It's up to us to educate ourselves and seek help through the GP for councelling for the mental side of it

Hi Chris998

Sorry you are feeling in such a bad way and feelings of being dismissed and ignored are not easy to deal with, you shouldn't have to feel that way. It is a problem faced by so many, not just with liver disease but with lots of the 'hidden' diseases. A friend of mine has something called McArdles, which leaves her unable to walk distances and do lots of other physical things without being in huge amounts of muscle pain. Now in her 60's, she has suffered with this all her life and she is rightly registered disabled, and has a blue badge for her car. You can sit and see those memes on places like facebook all day long about being nice to people, hidden diseases, etc - yet still last week in the carpark at Waitrose, someone told her to get out of the disabled parking space because she simply does not 'look' disabled or ill in any way. She has also had the same problems with the medical profession, few actually understand the disease because it is quite rare and has often had to go round in circles several times to get the treatments or tests/monitoring she needs.

Her words to me when I explained about my liver problems very recently, I can probably pass onto you now. "Do what you can, do it when you can. Don't pay attention to what other people say or think, this is your life, fight for your health and peace of mind. You are going to have some really s*** days, and some that are less so and some when you feel completely 'normal' again. However remember one thing - there is NO such thing as normal, because actually 'normal' is different for everyone." Im starting to realise she is so very right.

Sending you lots of virtual hugs and hope you manage to turn a corner, both yourself and with the medics, and can start to move on. The future might be a little different to what you planned, but there is more than likely still a lot of it so it might as well be a good one!

Hi Chris,

I'm sorry things are so crap for you just now.

Unfortunately, the only people who truly understand liver disease are us, the sufferers. My friends and family do acknowledge it, but, sadly, make little attempt to understand the daily problems that, in my case, F4 cirrhosis, brings.

I wish I could offer you a solution, but this dreadful disease, and it's symptoms, affects our lives daily.

I did, and still do suffer with depression, both before, and after my diagnosis over 3 years ago.

Maybe you should seek help with your feelings as I did. I'm not completely cured of depression, but at least, now I can manage it.

The best support I have found, is on our forum, from folk who understand.

David

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Illegitimi non carborundum

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So true.

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