Hi, Does anyone out there have Cirrhosis

I seem to be in the dark about my illness, I was with this in 2009, since then I have been quite well, I have asked my Doctor many many questions about this illness only to be told "ask the consultant" which I am no longer under as according to my last visit my bloods were "normal" and I have gained weight, I have no idea what type of Cirrhosis I have, I have read this site many times and I can only find Hep a,b or c! that is the stage before Cirrhosis? Anyone x thanks Tess x

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  • Cirrhosis of the liver is the condition when your liver has sustained scarring and damage - it can happen due to alcohol misuse but this is NOT the only factor. It can be as a result of any number of illnesses, infections, genetic conditions, auto-immune conditions and more. Sadly at the moment cirrhosis is irreversible!

    Blood tests especially LFT (liver function tests) can be almost normal even with cirrhosis, LFT is not conclusive once the liver has sustained damage as far down the line as Cirrhosis.

    My hubby has Cirrhosis which we only learned following a serious upper GI Bleed (burst varices, portal hypertension), at the time of diagnosis he had a biopsy and an ultrasound and loads of blood tests. Initially blood tests were fairly irregular but normalized whilst in hospital.

    He still has Portal Hypertension with varices and have been seeing consultant gastroenterologist but in June this year we finally got to see a hepatologyist at the Scottish Liver Transplant Unit in Edinburgh. My hubby has never drunk and his condition seems to have been caused by some auto-immune condition. Other than regular endoscopy and banding of his varices he hasn't received any treatment for the liver itself.

    With cirrhosis you can be compensated which means the liver is full filling most of its functions (but not all) and you can appear fairly well. My hubby is compensated at present:- exhausted all the time, sleep disrupted, no ascites, a little jaundice, no libido. Decompensated cirrhosis is when the major worries start as it means the liver is struggling and can lead to real bad symptoms. We feel a little in the dark as to where we go from here with his condition, we next see our Edinburgh consultant in October when we hope to get lots and lots more information - we go together, make notes and write down questions beforehand and having both of us there we can hopefully make more sense of things.

    Even though you've put on weight and bloods appear normal you should still be having your condition monitored. Any cirrhosis patient should have 6 monthly ultrasound scans for a start as cirrhotic liver tissue can lead to liver cancer lesions and if picked up quickly they are treatable. Regular blood tests are also advised to check for different chemicals in which might indicate a worsening of the condition.

    It sounds as though you are compensated at present but that can change. Although my hubby isn't currently getting treatment or medicine for the liver he is being monitored, now under 2 consultants, varices being 'obliterated' by endoscopy and banding (monthly), bloods taken regularly and ultrasound scans every 6 months. Though it has got to be said i've pushed for a lot of these having read up details on the British Liver Trust main site and various other sites.

    Be proactive with your condition, if you feel things arn't right (there are many symptoms that we probably put down to other things - we put lots of my hubby's symptoms down to depression and anxiety but found out they were all on the list of Cirrhosis symptoms) then request to see a consultant and get yourself monitored.

    Check out the BLT site for the downloadable leaflets about cirrhosis and living with liver disease etc. they are really good and full of advice.

    Take care of yourself and best wishes,

    AyrshireK

  • Hello Tess,

    Yes I have cirrhosis which developed from the fibrosis caused by autoimmune hepatitis which was diagnosed in 2009. Initially I lived life very much the same as before and as it seems you also doing, and I remained very physically active. However this all changed when I developed mild ascites which is an indication the liver has become decompensated and it has led to fairly frequent bouts of being fatigued and lacking in physical energy. Fortunately I haven't developed internal bleeding from varices and with the diuretics spironolactone and bumetanide keeping the ascites well under control I generally feel very well and regaining a reasonable ability to physically exercise again although on a slowly slowly basis . Hopefully for me the current good progress will continue for as long as possible because I am one of those that falls into the catergory of being too old for a liver transplant which otherwise may have provided some hope at the end of the tunnel.

    .

    The link below will take you to the Patient UK information leaflet on Cirrhosis and its stages (their information leaflets etc are written or agreed by professionals so are reasonably reliable) and you may find this useful

    patient.co.uk/doctor/cirrho...

    Although you indicate you have had cirrhosis since 2009 you do not say whether there have been any adverse indications or symptoms that have led to you now querying the disease but if there has been then it may be a good idea to demand a further consultation with the Consultant that was treating you but whom you no longer see or alternatively with a new one. Personally I do not think cirrhosis can be left untreated even if only that it be subject to periodic monitoring and review by the Consultant. Just my view.

    Good luck and best wishes.

  • I agree with all that has been said in the two replies above. So I cannot offer any more help. However your GP should know that you no longer see a consultant so have no one to ask! There are a lot of tests available (eg fibroscan, different blood tests such as AFP) which might only be able to be accessed via a hospital consultant - maybe you should discuss re-referral by your GP - to a hepatologist (liver specialist). The situation varies a lot across the country. Good luck.

  • Hi Tess, I, too, have cirrhosis. I was diagnosed with Hep C in 1996 and the disease was successfully treated. I already had some scarring then so it's not necessarily a rapidly progressing condition. You need more information and guidance from the health service and need to press for a consultation with a gastroenterologist at least. I think I'm quite lucky in that I've only started treatment for varices this Spring. The treatment is the worst procedure I've ever had lol. I would dvise you to go back to your GP and press for a consultation so that regular monitoring of the progress of the disease can be ascertained. Good luck and good outcomes Phil

  • There is a good group on face book where you can chat, ask questions and get support, its called "living with cirrhosis"

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