Gaining weight which I thought was due to menopause , alarmed when bilateral ankle oedema ( could not see ankles ) . Gp appointment that day bloods etc 2 days later was called at home ca125 sky high , they thought it was ovarian cancer .
Luckily having private health I was able to see a gynaecologist that day where it was 95% ruled out , have to admit the relief was immense .
Now this diagnosis !! Complete shock . Feel like I am in a very dark tunnel.Emotional all the time , insomnia - I know it can be due to condition and /or medication but from being a normally positive person to one who has gone totally the other way I find this so very distressing .It feels like you have lost control over your own body.
Haven't drank for over 25 years ,did in the 80s (weekends , partying like most people but not over excessively),but this is what the specialist is putting my cirrhosis down too as all others ruled out.
I have a question which I am unable to get a straight answer to , if you are told today you have cirrhosis and you stop drinking today there is a chance that the liver can regenerate , why in 25 years didn't mine ?
I am also struggling with conflicting information re nutrition , want to have liver specialist nutritionist which is not easy to find , has anybody got a name of such one or a diet that they can share ?
If you are reading this then you / family members maybe going through this terrible condition and I thank you for taking time to read this.
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Ant-12
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sorry for your illness. Im pretty shocked they are putting it to you drinking 25 years ago! Do you still drink? have you ever taken pain medication and over the counter meds?
No almost t-total would have a small Buck's Fizz ( certainly more orange than fizz) for celebrations only . I stopped alcohol pre pregnancy and then didn't enjoy taste so went t-total not for any health issue. I was always delegated taxi driver too !! I can count on one hand the amount I drank in 2014 .
No medication ever taken either , so I think that is why they have surmised alcohol related .
I wouldnt accept that as a diagnosis. What blood tests has the GP taken. Liver damage can be caused by many different things: long term medication, diabetes, diet, lifestyle, viral hepatitis, autoimmune hepatitis, various deficiencies etc etc. Unfortunatly GPs are not well up on different causes and tend to plump for the easy option which is drinking. I would do some research yourself on say, the British Liver Trust website and see if anything rings a bell with you as to the cause and then go see a different GP!
Hi, i find it almost unbelievable that they can say its down to alcohol when you havn't drunk for 25 years; i would get a 2nd opinion if i were you; i don't see how that could possibly be the cause. Apart from the recent health issues, during the 25 years did you have any symptoms? The liver will not regenerate with Cirrhosis (as far as im aware); however, if it was due to alcohol, so long as the person ceases drinking totally and for ever, then then further damage should cease; and provided the liver is functioning quite well you can often live a normal life overall. thats why it doesnt make sense in your case; have the specialists told you other things? eg, is it compensated or decompensated? what other symptoms do you have? Nutrition wise, id say cut out all excess salt, dont put salt on your meals or eat things with alot of salt content; i wouldn't have thought you would need a nutritionist (your specialist should be advising you of everything). It doesn't sound to me, like you have been told very much.
Complicated story really ... Last December saw gp as I was having low sugar drops , came back with abnormal lfts , saw a private gastroenterologist who did u/s mrcp all came back normal Hep B/C normal .
Quote from her was "you are too well to be ill" she would see me again in 6 months and if still abnormal would perform biopsy . Unfortunately July 2014 I needed op on finger and bloods showed results getting worse the surgeon wrote to her and she said would see me in October . She was on holiday when I booked and first available was November , but my ascites came before my appointment !! .
I changed gastroenterologist and all tests repeated biopsy and endoscopy confirming cirrhosis now decompensated .
It is this consultant that has said alcohol related , I wondered the same regarding the believing but he did say that my biopsy had been sent to kings for second opinion and they could confirm that I did not drink !! ( didn't know there was a test to show that ) was on 40 mg pred but now reducing as they have made no improvement to the bloods at all .
My symptoms are now insomnia , lethargy which could be due to the insomnia slight jaundice in eyes , change of bowel habits , taking 20mls lactulose twice daily still not helping so may need to up that , fuzzy brain and slight tremor ( but this could be the worry)
I do have an appointment on Tuesday with a professor from kings for his opinion and to introduce me into the transplant system .however now arguing with my private health as they have informed me that my insurance is invalid as it is alcohol related and I signed a policy stating I did not drink .aghhhhh another battle .
Have cut salt completely never really liking it apart from on chips ! And that I can certainly live without . Eating carbs ,protein ,pulses fruit and veg all that the liver trust suggests but researching Internet which can be a dangerous tool it conflicts about too much protein too much sugar found in fruits that it all becomes a bit of a minefield .
I do feel you are left to find your own solutions and I really do value all responses to this post .
I agree with the others, drinking alcohol 25 years ago is not an acceptable reason. Sounds like your first gastro was useless. It sounds like it has been quite fast acting in getting to ascites so quick. Do you have a history of any bloods to go back and check things out?
The consultant that said it was alcohol might be just one that is very against alcohol and jumping on it too soon. There is a myriad of things it could be, sometimes they have to just say they don't know. If drinking for a time when your young would do this 25 years later, most of the population would be having the same issue and cirrhosis would be the top killer in the UK. Its seems totally logical that some thing else is at play here.
I think that has been my struggle having alcohol blamed ,instead of identifying a cause or admitting they have no explanation. If I had a £1 for everybody that has said to me "but you don't drink "I would be a very wealthy ...but still unhealthy lady (reality is I have cirrhosis nothing will change that so I really don't know why I am letting it get to me ... But it does).
Have had no contact with gp for years prior to the low sugar so I am unsure if lfts have ever been done but it is something I will check with at surgery on Monday, so thanks for that.
With the exception of the British liver trust ,has anybody got any good websites that can be recommended ?.
New to this posting so please bear with me if I keep asking questions .
Have you been tested for PBC or AIH? There are many different liver diseases and alcohol is not responsible for them all by any means. Sadly even some of the medical profession think the liver is only ever damaged by drinking. No wonder joe public thinks the same.
I agree with Godfrey....autoimmune diseases have very similar symptoms to what you describe. I have PBC.... I like you drank in younger years, biopsy showed scarring not due to alcohol. You can access PBC foundation on line.. less salt..carbs late at night helps you sleep a bit better as they keep liver working overnight. Don't ask me how..liver dietician advised me. Any other things I may be able to help you with just ask
Whoever your private medical insurers are, they sound like a waste of space and a waste of your money and are totally out of order and conning you. They are blaming alcohol just so they don't have to cover the cost of your treatment; diabolical; precious time has also been wasted; i have had personal experience of precious time being wasted, health professionals not caring, not doing what they should be doing etc; and whether or not a persons liver disease is due to alcohol or not; that person should still be treated with respect and dignity and not like they are a waste of space or looked upon as dirt. Im about 99% convinced that yours cannot be due to alcohol. Did you not ever even have an ultrasound or fibroscan? One of the best Hopsitals to go to in London is The Royal Free; i cannot recommend them enough. Kings college sound good too; good luck and i hope you get the proper treatment asap.
Hi Ant 12. I do not for one second believe this is alcohol related. Some Dr.s do like to put you into a box and alcohol is the most blamed one. As Bolly and others have said there are numerous other things which could lead to cirrhosis, some auto- immune , genetic, drug related(prescribed drugs). I truly would take the alcohol diagnosis with a pinch of salt. There are many groups you can get support from, some specific to the diagnosis of why and some general, they are a great help at these difficult very scary times when you are first diagnosed. If you contact me separately I perhaps can suggest some for you. There many more tests which need to be undertaken , not just for Hep B/C which could help reveal why, and therefore can aid in getting the correct treatment. You are not alone, although it may feel like it. There is a huge community out there.
Agree with those who say dont accept the diagnosis you have been given, hopefully Kings will start from scratch again and do thorough testing. If it was Autoimmune (AIH) you would have responded to the 40mg pred, so it doesnt sound like its that. Any history of diabetes in the family?
I doubt that your cirrhosis is caused by alcohol. You ask for details of where you can be seen by a consultant who is experienced with liver problems. I had a transplant in St. James hospital in Leeds I think there are specialist units in hospitals in Southampton (possibly the best), London,Birmingham,Manchester and Newcastle. I am sure if you contact St.James they could provide details of a unit nearest where you live. Try to lift your spirits and keep a positive attitude, I believe this does help,you cannot seperate the body and the mind.If you want any further information feel free to contact me through this link, I have been through the system. I wish you the very best of good fortune.
Wow thanks for a great response . Thought it was me being oversensitive but now I am definitely going to fight my corner re cause.
Have been seeing gastroenterologist but due to see hepatologist on Tuesday so perhaps I may be given more answers , notebook to the ready .
I have to admit have had every scan , biopsy ,endoscopy ( showed oesophageal varice) but no fibroscan - doc said no need as all info needed was gained from biopsy.
Weakly positive autoimmune blood tests AMA normal however my gamma gt is 506 and I think it's that that's leading them down the alcohol route !.
I am sure i do not need to say when I think of the journey ahead it terrifies me . I know I am not ill enough for a transplant (yet) but why do you have to become so ill to need one and then may be too ill to receive it ?.obviously I appreciate that there needs to be a priority list but surely if you are put on list straight away you can be moved up/ down accordingly . To me being on the list would help mentally or am I being unrealistic ?
There is certainly an ever increasing community out there just not one that you ever thought about until you are dealt this card.
I had your symptoms,weight gain,swollen ankles and very dark urine,never touched alcohol in my life or drugs or even a paracetamol.. It took docs 3 months to diagnose me with AIH,however I did respond to 40mg prednisolone,I take loads of medication and specialist thinks I now have probs with gallbladder or pancreas.I have never had a good day since. The docs didn't believe that I had never touched alcohol as it would have been a far easier option for them and they were baffled for ages,I have found it very hard to get any real answers from my specialist who's favouriteanswer is 'I don't know
'.Don't give up intryingto get an accurate diagnosis or cause,good luck x
There are others better informed than me re transplants and listing for transplant, but to answer your question about why people are not listed once they get cirrhosis, well there is always a possibility people will stabilise with cirrhosis and live for many more years, its much better for you to live with YOUR liver than live the rest of your life medicated to be able to live with someone else's. Also there is an acute shortage of donor livers, so only the most needy and those with the best chance of a good recovery post transplant and a good chance of a long life expectancy post transplant, will get a new liver.
Thanks for reply .. Yes aih has been ruled out due to non response to steroids .
I do have more determination this past few days to ID cause ,probably fuelled by all the positive responses .
I am concerned that since diagnosis how quickly symptoms are appearing ( fatigue, fuzzy brain ,slight tremors and lack of coordination ....or is this just a psychological thing ?.The lack of sleep certainly does not help .
Luckily my employer is so understanding as work is the last thing I could concentrate on, so there are always some positives out there.
I want to wish everybody that has responded / reading this ,massive good luck in the year ahead .
Thanks bolly, I realise now how selfish I sounded ,not like me at all normally.
I am being totally irrational on everything at the moment ,hate the lack of control over my own body . I have led a healthy(ish) lifestyle bar chocolate which was a weakness. !! Now I feel I am totally in the hands of others ,all responsibility being taken away from me .
I really do appreciate reality checks from others that are in similar circumstances though, wouldn't from my poor husband !!
Hi Ant-12, hopefully you will begin to get some proper answers once you get seen by a liver specialist at Kings and they will steer your treatment from then on - whether that means progression to listing for transplant or suggestions for other therapies.
My hubby has cirrhosis to the degree that he is now listed for transplant - our story is well documented throughout this site so won't regurgitate it all over again (all other readers are breathing a massive sigh of relief over that!! LOL).
He is has been tee-total all his life and never showed any signs of ill health at all ever until he had a massive upper GI bleed after which we learned he had advanced chronic cirrhosis of the liver, varices and portal hypertension. He was told that there were traces of rogue anti-bodies in his system and that his condition is likely to have been caused by AIH in the past which is now burnt out. His blood went a little off this time last year so doctor started him on 20mg Prednisolone which did nothing at all and a further biopsy showed no ongoing inflammation but confirmed the chronic cirrhosis.
With there being no way of treating his cirrhosis he then underwent the transplant assessment and the decision to list was a bit border line as his bloods go up and down - some months he meets the criteria for listing (i.e. UKELD score of 49) and some months he doesn't.
He isn't jaundiced, has no ascites (has never had), is a little fuzzy in the head (now being treated with RIFAXIMIN and LACTULOSE), he has had 42 varices banded and these are currently 'obliterated' due to consultants aggressive endoscopy and banding regime. He's also been anemic and had to have numerous splenic artery aneurysms embolised (these had been caused by Portal Hypertension). His only meds are 5mg Prednisolone, 40 mg Omeprazole, 40 ml Lactulose, Rifaximin, Iron Tablets and now lifelong Penicillin V as his spleen died following the embolisation operation.
He's now been listed since July 2014 and there seems no likelyhood of a transplant anytime soon as others are more poorly than him and they will always get first dibs on any available liver. If you do get listed then life is a bit restricted, we can't go away from home to any degree as we have to be ready to leave for the hospital within an hour and as we live nearly 3 hours from our transplant centre we are already restricted. We have to let the TP co-ordinators know of any travel plans such as at Christmas when we went to my parents. Even going places we carry a hospital bag in readiness and always have to have phones at hand. I'm self-employed touring schools giving history talks but sadly i've had to suspend this just now as I can't be sure I can honour bookings and I can't be hours away from home in case hubby gets the call.
Hubby sees the liver specialist dietician at the transplant unit at every consultation and we are now going to the TP unit every 6 weeks or so. I am sure if you ask at Kings they will put you in touch with their dietician, hubby saw the one at Edinburgh on his first consultation with them as he was rather malnourished and having difficulty with reactions to various food stuffs. She's done a wonderful job initially providing a brilliant diet plan and since transplant assessment a prescription for supplements which have taken hubby from a lifelong highest weight of 8 1/2 stone (soaking wet) to currently approaching 11 stone.
Hopefully your new consultant at Kings will shed some light on the situation for you and if you do get listed for transplant then that light at the end of the tunnel will go on for you, we felt that way when hubby was listed even though we could be in for a very long wait. At least we know he is being very closely monitored by the best experts in this country and that hopefully when his need really arises he'll move up that list.
The thing with transplant is there are no guarantees, the procedure itself is massive and not everyone gets through the surgery, not everyone gets the life changing benefits that many transplant recipients experience, some folks end up with damaged kidneys due to it, many end up diabetic, most of the folks at Edinburgh who are post transplant seem to be walking with sticks. SO, as we see it whilst you have some decent life in you (as my hubby has some days) they aren't going to risk killing you or making you more poorly until you really need that liver - to save your life. We are trying to live our lives the best we can, make the most of good days and hopefully when he does NEED that liver one will be forthcoming & he'll still be fit enough to receive it and recover. I thoroughly described the TP assessment in another thread and it shows you how they ensure you are still 'fit enough' to undergo the operation & more importantly the recovery.
I'll sign off now, good luck and best wishes for your appointment at Kings later this week.
Hi, one thing, just in case you were not aware, in regard to liver transplants and waiting times/ worries about whether or not a liver would become available should you need a transplant at some stage; you can get 'live' donors. In other words, a family member may wish to consider being a 'live' donor. Obviously, this is a major undertaking for them; but i understand that part of the live donors liver is given to the patient; the liver then regenerates itself. Good luck.
Yes, we know that Susieanna, Edinburgh pioneered the live donor procedure, sadly none of hubbies family would be fit enough to donate and even if I was compatible (i'd give at the drop of a hat) i'd be laid up the same as hubby for the period when he would most need my care:- driving to appointments, lifting, just general house work etc. So unfortunately the live donor process isn't suitable in our case.
Hi susieanna , was told that not a possibility for me as my liver was too damaged however it is on my question list for Tuesday so will let you know what is said.
I am totally overwhelmed by the responses to this posting and hope one day I will be able to help others with the same amount of kindness as shown to me.
I have a friend who has a very damaged liver and looks quite poorly she is so upbeat and optimistic and QE have offered her transplant there is always hope my husband has been diagnosed with Hcc and every day is a blessing although not curable QE are going to do their best for him. Strangely I developed Cirrhosis In 2011 and with diet and exercise am keeping well as a non drinker it was a shock at the time but always something new in medicine so keep smiling there are lots of kind people in this world as I have also found
Hi Katie, i do hope your hubbie manages to get his transplant; cirrhosis is such a terrible thing to have and so complicated.
Hi Ann, in regard to being told your liver is 'too damaged' re a transplant; Kings may have a different opinion and its good that at least you are getting to see a consultant there in a couple of days and also that you have made a list of questions to ask; this is a good community health web site and im glad i found it.
I developed cirrhosis at the end of 2011 as a non drinker all rather a shock, I was very ill
Until mid Aug 2012 now well no medication I eat healthily I am about the correct weight and keep having my three monthly bloods taken and six monthly screening there has never been a diagnosis of what caused the damage and the awful time I had for 8 months so keep positive and things can get better. My dietitian (nhs) suggested no smoked foods ham bacon sausage high fat foods, plenty of good protein eggs fish chicken and a complex carb before bed I have a small portion of cereal eg weetabix non sugary to support my liver, it seems to be working and the excellent booklet from British liver trust was my bible. I hope this helps and wish you well
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Living with CESD (Cholesterol Ester Storage Disease) 
CIRRHOSIS?
Diagnosed with cirrhosis 6 months ago
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