New to this Blog and recently diagnosed with Liver Disease

New to this, have a stack of questions, help and general argh feelings.

I am a 46 yo male, upto now generally healthy.

But I drunk too much and started to cause general health issues, mainly stomach and gastric based.

Had a blood test back in September 2012 and had a LFT test as well my Gamma GT was over 1200. Was revered to alcohol advice and told to reduce. I ignored basically and carried on drinking.

2nd Jan 2013 - clasped unable to breath and a stomach looking like I was 9 months pregnant. Was taken straight to ward with loads of bags and stuff attached.

Was diagnosed with Ascites and Liver damage caused by alcohol abuse, portal vein Varices and on stomach. Was in hospital for 4 weeks with all the tests being done. Ultrasound, X-ray, gastropathy, stomach drain 9ltr drained. Had 3 sets of infections as well and my bloods all over the place. Finally discharged, lost 4 stone in 3 weeks...was told if I carried on drinking I would be back but would not need discharging again!!!!!

I left hospital and went straight to a pub....no not to order a beer, a pint of coke, it was a mind thing.

I have not had a alcoholic drink since 2nd Jan. in fact I don't actually crave one. I still go to the pub and socialise and drink coke.

I am on the normal set of drugs, Spiro, Fluromide, Proponal, Omazapole, thiamin, Vit B, lactolose. And some ther tabs every now and again...oh pain killers as well.

I feel better than I did, but get very tired, and no energy. Sleep pattern is shot to pieces one minute up all night next minute sleeping in day. Pins and needles, itches, head aches extreme dizzyness as well. Very thin weak, loss of body muscle and unable to gain weight even though I am eating ok. Confusion and lack of concentration to top it off.

I am confused by certain things about the condition and get conflicting advice from my GP, Consultant and counsellor. Web is great but makes you more paranoid about stuff.

I have bloods taken every two weeks with DR follow up week after most tests are levelling off with abnormal tests being referred to as not right but under review. gamma GT 450 still.

One new confusion this week, Hep B test has come back positive, so more head scratching.

So no real questions here as such just my frustration and confusion..and my story. I like to take this opportunity in sincerely thanking my partner in standing by me, supporting and importantly making me laugh.

Thanks for reading Andy....

14 Replies

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  • Dear Andy,

    "WOW"! That's fantastic that you've turned your life around so quickly - a very big WELL DONE YOU! After reading your 'post' I felt really pleased that you've shared your story with all of us here - thankyou!

    For those who are in similar situations that you were in, or for anyone who has a friend or family member who shares the same circumstances, they will be inspired by you, and realise that there can be light at the end of the tunnel.

    So many people think that they are 'beyond' any help, and that the damage has been done, so they don't think that it's worth changing or addressing their lifestyle.

    However, as in your case, (and as with so many others who take responsibility of their health), you have demonstrated that improvements can be made, and that one should never think that it's 'too late' to implement any changes.

    Your LFT results should continue to improve, and it could be that you're still suffering from some symptoms, due to the fact that it is quite 'early days' in respect of the alcohol abstinence.

    It is good that you are seeing your GP and having regular blood tests. The medications that you are taking should be reviewed regularly, and tapered when possible.

    With regard to the Hepatitis B result, is it possible that this is a recent transmission?

    Was it the HBsAg test that was showing a positive result?

    If you would like to discuss Hepatitis B further, or if you have any questions which you feel I could answer, please feel free to call me on the Helpline number: 0800 652 7330, or email me at: sarah.tattersall@britishlivertrust.org.uk

    All good wishes to you Andy and Good Luck for the future.

    Kind regards,

    Sarah Tattersall

    Patient Enquiry Officer

    British Liver Trust

  • Hi Andy

    I can see why you are confused. It must have come as a shock to realise you are quite poorly, but well done for trying to work out what to do to improve things.

    I'm Hep B positive so can tell you a little about that, if it will help - feel free to post any questions you have.

    Your liver has, all your life, been doing an amazing job for you: it's been fighting infections, destroying the toxins of alcohol and drugs, cleaning your blood and helping with food digestion. It works hard and can take a lot of abuse, but it can only manage so much before it breaks.

    To have both viral hepatitis and alcohol bashing away at it, you will I'm sure have had times when you have felt fluey or unwell, had problems with digesting certain foods, hangovers, fatigue, unexplained itching, putting on weight round your tummy, etc etc. Maybe you just didnt link them to your liver.

    Liver disease progresses through your liver coping with the abuse (compensated) to where it can't anymore (decompensated). You have signs of decompensated liver disease or cirrhosis which include the portal hypertension, varices, tummy swollen with fluid (ascites) and your confusion (encephalopathy).

    If a person wants to help their liver, the best way is to remove the cause of the damage. In your case, that would be the alcohol, so heres hoping you dont drink now. If you do, its like pouring gasoline on a fire.

    However you also have an active hepatitis virus - Hep B. Your list of meds doesnt include a medication for the Hep B. Medication to suppress the Hep B virus is quite tough on the body, so I'm assuming the docs have made the decision that you arent well enough or they are unsure how long you have had the virus to take any Hep B meds. This means that even without alcohol your liver is still under attack. Do you know if they know if its acute or chronic?

    You are on all the right meds for your side effects of cirrhosis. As your liver processes medications, ironically by taking all these meds your liver is under extra stress. The meds are to control the side effects, they are not a cure for the liver.

    Good to hear you are under review, dont miss any check-ups, and if you can, take your partner with you to take notes or take in what is being said by the docs as sometimes its difficult to take it all in and remember what was said later.

  • Sarah

    Many thanks for the kind words and thoughts. If it was not for the hospitalisation I would probably still be drink or worse, it gave me a focus why to change and completely stop. I used to say I just reduce but realised its a harder target to manage and easy for 1 or 2 turn into 3,4, 5.

    I think I had my blinkered eyes on as the symptoms and advice was pretty forth coming, just need that major incident to make me realise.

    Of course every day brings its challenges and issues, some good days and some bad day. Some days I feel like a fraud as I feel fine, but then the disease seems to kick you in backside later on to remind you. I am still learning and reading up on the complexity of the drugs and symptoms. Did not mention in other post, also been diagnosed with Perliheral Neuropathy and Duptrynes Contractor (just had the op one my hand last week), all of course associated ailments.

    As for the Hep B I am picking up the results today so I can see what type has come back positive, was a bit of a shock yesterday and was not thinking to ask. Dr is checking with my specialist on next coarse of action on this. No I doubt it is a recent transmission as alcohol is not the only thing being abstained, partner understand that issue!

    I understand that it is early days in the recovery process, if recovery is the right term. But I am I determined that I carry on we're possible normalitity.

    Also I have been impressed by our heavy over stretched NHS, Dr and other support service, could not ask for more. Only point is slightly disjointed on information in one place.

    I am also impressed by the responses and information on here. I kept on looking at it and not joining in, but so glad I did. Only wish there was a group close to me in Chesterfield.

    I will ring Sarah once I have some additional information on the Hep B results, I have study the elements last night.

    Thanks again and look forward to discussing further.

  • Bolly

    Many thanks too for hour comments and thoughts. It seems like you been reading my medical notes, yes I got decompensated Liver disease. As for Hep B result, yes many thanks as per email from Sarah I get more facts later today.

    Agree it's important to keep your partner involved were possible and be honest and open, as some symptoms/effects can be strange or scary. Lucky that partners family comes from a medical back ground. Which is a double edge sword at times.

    If okay I message when I have some more information.

    Many thanks...

  • My pleasure Andy!

    I will look forward to hearing further from you.

    Bolly has fedback with some excellent comments and advice, and it's good to know that someone who has the experience of similar issues as you, is there to share and support you.

    Thank you Bolly.

    In the meantime............lots of good wishes coming your way,

    Sarah Tattersall

    Patient Enquiry Officer

    British Liver Trust

  • Hi Andy.

    With Hep B there are a number of different blood tests that can clevely tell a doctor what stage of the disease the patient is at. Probably at this stage you've just been tested for antibodies which tells a doctor that you have at some time been exposed to it but doesnt tell them if your have cleared it naturally or are still a carrier.

    At some stage the medics will probably run some or all of the following blood tests:

    - Hepatitis B surface antigen (HBsAg)

    - Hepatitis B e-antigen (HBeAg)

    - Anti-hepatitis B core antigen (anti-HBc)

    - HBV DNA.

    Until you get far enough down the testing route, its speculative whether you are a chronic carrier or not, but yes, it is transmissable by sex so best to stay safe for your partners sake. Also make sure they dont share bathroom things like razors and toothbrush. It would be sensible for your partner to talk to their GP about getting vaccinated for Hep B. One less worry for you both.

    From what you say about your liver symptoms, I suspect the medics will at the moment be concentrating on stablilising the side effect of the cirrhosis. Its quite a cocktail of drugs to take, which in themselves can have side effects and make you feel different to how you did before you started taking them!

    As regards carry on as normal, yes in a sense that's a good positive attitude. But it could in fact help to change a few things to give your liver as much TLC as possible. Absolutely no alcohol at all. Why throw all those drugs down your throat just to compromise what they are trying to do. Have a look at what you eat too, you may find fatty foods are giving you indigestion. Try eating little and often, grazing rather than eating 'meals'. Protein is good and can be found in things like nuts and pulses not just meat. Fresh food where possible, cut right down on salt - look at the labels on packets and tins and you find lots of hidden salt. Also try and avoid taking any over the counter meds such as painkillers, flu remedies, etc if you can as these add extra burdens. Rest as much as is practical, but dont give up exercise, gentle walking is fine.

    And keep copies where possible of all your test results and letters between GP/specialist, as they help to give you a clearer picture of whats going on. The NHS is fab, I owe my life to it picking up liver cancer and early and giving me a second chance. But its overstretched so the more you understand about your condition and what you can do to help yourself in between doctor visits, the better.

  • Thanks Brolly.

    Dr was not in but managed to pick up the forms, it seems it was a generic test non specific or the copy I have is that, , but I have bloods taken then and see Hep B is back on general tests.

    Strange other test has appeared on my bi-weekly stabbing, ANA-HepB2, thought it was strange last week with 4 tubes normally 2 is that related to Hep B, it is positive but no specific ranges. Done my research but stopped as was getting more confused what it actual is a indication for. Well in fact my partner took my iPad off me.

    Yes partner and I are extremely careful on the basic hygiene and common sense parts of day to day management. As for food, it's a balancing act at the moment, 2 months ago I had zero appetite, now I do, but sometimes not the right things I should eat. Strange in fact it's like I am pregnant and crave certain foods. But I agree salt must be reduced and sugars too. Yes I have been eating small portions and often does help as well. Used to be a Chef in a hospital so aware totally on nutrition. Dr view was as well as you are eating reasobably well at the moment the bad things we can take out. But I am not gaining any weight...was just under 14st now 10st 10lb...and look very then.

    Again thanks I wait to Monday to discuss specifics with Dr....

  • Hi Andy

    It might be the ANA-HEp-2 (not HepB2). Its a test to rule out some autoimmune conditions. If your IgG is high that might be why they have included this extra test.

    I still think the main concern will be to try and ease/stabilise the side effects of the cirrhosis.

    Decompensted cirrhosis is quite a balancing act to stablilise. Cirrhosis causes health issues to develop, and while they can mostly be addressed, they require medications that are liver toxic. If you choose not to medicate, then the health issue itself can become a problem. In general the prognosis for a cirrhotic person is less favourable than for Joe Average who isn't hepatically challenged. Doesn't mean that if you become good at juggling all the different balls you can't have ok expectations but realistically quantity and quality of life will be affected.

    Any questions on the HepB, let me know when you have seen your GP. Bear in mind that the GP might not have seen as many cases of B as C (which is more common in the UK). I did a whole load of research into my Hep B genotype and discovered it was common in East Africa, which is where I probably was infected. My suburban GP in the UK wasnt the most up to date on what to do about it!

  • "Used to be a Chef in a hospital so aware totally on nutrition" has caught my attention. Today we have a headline in the news which reads: "At least 1165 people have starved to death in NHS hospitals over the past 4 years ..."

    I've been watching with fascination the series on tv called "Operation Hospital Food with James Martin". Have you seen any of it?

    Since being diagnosed with liver cancer 2+ years ago, I rethought my diet and tried to eat in a more 'liver friendly way'. As an NHS inpatient I do struggle with the food. It's an eye opener to hear that many hospital kitchens have a budget of around £3 per patient. How 'nutritious' can one make 3 meals a day on that?

    On my most recent stay on a gastroenterology ward bay of 7 patients, we were a mix of i) moving toward being fed by PEG, ii) TPN feeding, iii) an anorexic with gastritis iv) 2 patients with ulcers v) one on detox, and vi) me. Two patients were diabetic, one Type 1 and one Type 2.

    All of us were offered the same menu. For me, it was too high carb and too low in fibre/fresh fruit and veg. I came home constipated. For the ladies with diabetes it was too high sugar and salt. Those with ulcers and on PEG or TPN needed a soft or liquid diet.

    We got cereal or toast for breakfast - high sugar cereal, soggy cold toast

    We got soup (seemed home-made but very salty), a high carb main course ie. pies and chips or battered fish, lots of mashed potato options or baked potato and beans type meals.

    Then usually sponge pudding and custard or a jelly or yogurt. No fresh fruit or even a fruit salad.

    Most patients refused much of the food, a lot of it was sent back - mega waste. I was in for a week and the elderly lady next to me never ate a full meal the entire week as nothing suited her dietary needs, nor did it 'tempt' her palate when she was feeling poorly.

    That was just one bay on a ward.

    Within the whole hospital you have geriatric needs, paediatric needs, those who are able to cope with any diet i.e orthopaedic but needing maybe plenty of calories/protein. Stroke patients needing mashable diets, heart patients needing low cholesterol, etc etc.

    It seems to me impossible to cater for those diverse nutritional needs on a large catering scale and within tight budgets.

    In the James Martin programme he does speak to nutritionists, who assess the nutritional content of the menus. On the wards though, the support workers dont seem to have been taught about dietary needs of different conditions, ie when I was in hospital many didnt know what celiac was and had to have 'gluten free' explained over and over. When I was in as a day case for a liver biopsy, there was a lady with ulcerative colitis/crohns and another with bowel cancer and both ate battered fish and chips for their main meal. Nobody said othewise and both seemed surprised to have serious gastric upset about 1/2 hour after the meal!

  • Brolly

    I could be here all day on nutrition in food. I worked heavily in nutrition in School Meals and NHS foods and part of several association and lobbying groups to the government departments.

    As with any TV program they are there to make a interesting TV program, Jamie Oliver's was too simplistic and did not bring the caterers along, James Martins was move sympathic to the catering department and the day to day issues, budgets, shortage of skill labour and medical staff not thinking that food goes hand in hand with medicine.

    in my time I have seen good examples of NHS food and some very bad. Mostly due to contractoring the service and tighter budgets. The key which James pointed out was the ordering and delivery method. Key cricitical failure points in the process. It amazes me what see some time.

    Recently, I had a four week stay, and food was the last thing on my mind, but I pushed my self to keep at it. Lucky and generally the food was okay, 7/10. My hospital had a good selection both good hot choices lunch and dinner which is rare. Again, some days I just wanted soup, and got err we see what we got, or if you get some from shop I do you a favour and heat it up.

    As you the nurses and ward staff have limited knowledge, I was on salt and general reduction diet, ticket it every day no one took notice. Was also on the red tray service which indicated high food requirement and attention. I eat about half, not because it was un edible was my attipitite, taste buds also not great. Did not help I was also on restrictive fluids of 1 1/2 ltrs.

    General I agree with your points but its not all the caterers issues, but they seem to take it, it's education and exceptance that food is also a drug, have my tablets and nutrients supplements.

  • hi andy, ive recently been diagnosed with varices,portal hypertension,splenamegaly and also suffer with all the symtoms youve got,plus more! ive been told that the only option for me is transplant, but at the mo that should be later rather than sooner(touchwood!)probs nxt 1 to 2 yrs? your proper lucky you have someone bro, all this is new to me and its proper burnt my head out trying to cope on my own, still i remain positive , and even if im not mentally, then physically ill always be hep c positive! ha ha ! if you dont laugh youll only cry....

  • Hi paul. Yes it burnt my head out and continues to do so, one word of advice for today, try not to see every ache pain, spot, headache, cough sneeze as a new sysptoms. It drove me mad hours studying each possible condition. Some correct and some just daily aches.

    Went for bi weekly blood letting today, so updated result Friday, things I look forward to now, har. Yes partner has been great, sometimes reminds me to keep,on a level ground, and will not let me get of light in doing stuff, ie no excuses!

    Agree you need to laugh about it, I try to, but then I get the brain going into overload, escepially were there are still too mainly unknown or uncontrolled things.

    I really found this community helpful and supportive so

    Was ask away....

    andy

  • I am in the same boat as you Pauul I'm totally in the dark. I changed doctors in august 2012 but its taken until now to get appointment as he didn't arrange it.

    I have ALD cirhhosis, varices, ascites etc etc I am currently taking everything you are and have been for nearly two years.

    I didn't really know what was wrong with me until I went for my follow up after numerous stays in hospital culminating in a bleed in 2011 and little chance of lasting the night.

    I was in hospital for five weeks had over 20 litres drained from my abdomen numerous banding following rebleeds and tubes feeding me.

    I had suffered a breakdown just 3 years earlier when I was admitted for over 6 weeks with hepatitis of the liver and all that goes with it.

    I abstained for over 2 years but stupidly came off my anti depressants without seeking advice and relapsed resulting in this.

    Since I left hospital I've met a wonderful girl whom accepts me for who I am and understands my problems and I've never been happier in my life and drink never enters my mind.

    Until recently I had been up and down but lately I am tired constantly my bones ache my toes are agony, I get breathless after very little excertion, weight issues as no appetite, bruising, bleeding a lot on minor cuts etc etc

    My doctors sent bloods to check for gout that came back negative but my bloods were abnormal but liver function is fine and I am only under investigation for liver disease and that I'm all fine and dandy.

    This can't be right surely, I had decompensated cirhhosis when I was released from hospital and now I haven't?

    I'm really pleased you chose to stop immediately if id have sought the correct help when I needed to I know it wouldn't have got this bad.

  • Hi Paul, Andy here. I am recently new to this blog to but I have found it a great place to find out information, advice and general moan and groan and to get empathy.

    I have very similar systmpons as you but no bleeding, but was close as the veins were close to splitting when I had my 6weeks visit to hospital. Bloods and tests every two weeks, with results going from good to raised, new tests here and positive new roads the consultant wants to look at.

    Symptoms he on my nerves on a day to day basis, although seem to have settled down the past week, but they have done that before and come back, but similar to yours. Agree I talk to thenDr about them and I get the sympathy but no outcome apart from its the condition or the side effects on the drugs. Guess I have to expect that.

    My weights is currently the main focus, they have reduced the diuretics as to assist the symptoms, partner finds it funny I have mastitis! As a result in reduction I have started putting weight as I look like Skelitor, but seems to be around the stomach which is not good, so monitoring that closely too.

    Some on here push eat very healthy, cut out salt, even chicken skin (Bolly this is becuase us naughty nchefs put lots of salt on the skin to answer a previuos question..yummy!) watch everything you eat minutely. Totally technically correct, but I go from not eating at all with no appetite to wanting to and crave certain food types.at the moment it's marmite, would not touch it now and have a constant supply, yes I know all salt watcheds very high. I do try on the diet, make my owe soups, stews and meals so I control the salt and content there. But I believe to eat something is better for both body and mind rather than overly worrying and not eating or being paranoid about it and ending up with food that is not appetising and inedible. Partner is in control of my salt intake (as such!) and hides the salt and salty items from me if I go on a craving or not careful in his mind. Of course everyone is different and you do have to review your own diet carefully with the correct input. guess what I am saying is generally eat good fresh fruit and veg, meat and monitor the bad elements along side the good.

    Again on food, I eat about 8 times a day, small manageable portions sometimes a main big meal, body and mind seem to handle that better than 3 standard food breaks. I have made up batches of food and frozen them down I to little potions from soups to stews or sweet puddings. If I get a craving, the microwave goes on. The consultant wants me to eat 3000 cals which is high, and carb/protein rich, struggling to achieve that on a daly basis. Btw I am 101/2 st from 14st (6ft tall) BMI 19.5 from 26. Salt/sodium...careful there is a difference, decide salt by 2.4 to get sodium. Salt intake no more that 1000mg ie 1g, normal amount by government is 3g. Btw I not a dietician but have extensive knowledge of this area.

    So on the food front....food is a medicine and need needs to be monitored like one, but goes not need to taste like one..

    ....that takes me onto another subject why to medicines taste horrid can they not make them taste of once things. Save that debate for another time.

    I totally agree having a supportive partner is a must from coming off the drink, mood swings, erratic behaviour and general malaise oh and paranoia. Partner does not wrap me up in cotton wool at all but motivates me to do stuff, and keeps me in the real world.

    I too have Decompenstated ALD and get confused what it really means as a prognosis or just a pigeon hole to put us in.

    Sorry Paul a general blog, I wish you well on this and others, don't make it a spent struggle and keep it to your self. I tell anyone who asks or is interested rather than hide behind ohh just have not been very well answers.

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