I was diagnosed cirrhosis last March due to chronicle Hep B. I was obviously very shocked then. I was feeling tired sometimes for no reasons and had itchy skins on legs and waist area and worse is I had pains around liver area. The treatment started with two types of drugs: lamivudine and Tenofovir and regular ultra-scan, blood tests. This June, I was told to stop laminudine and take only Tenofovir since the viral level is non-detectable and I feel better in general.
Here are the questions:
I met one of the specialists today and she warned me of the possibility of decompenstation, which will cause liver failure. I was worried that whether that will happen to me. I was wondering how likely this happens to cirrhosis patients.
I was also told that the reason I need a scan very six months is the possibility to have cancer. Again, I was quite sad to hear that as I thought I was getting better.
I am 36, single, I was thinking if it is still necessary to find a partner or even raise kids if my life expectancy is reduced and the uncertainty is too great for the partner to handle (seems unfair to any potential partner...).
Today I realised that I am not very far from the eventuality. I look forward to hearing from you if you have any helpful information. Many thanks.
Hi Tim, live life to the full, if you get the chance of happiness with a partner grab it.
I met my hubby in 2010 at that time he was having a bad time through other things and we put down his symptoms to depression & anxiety (as did his then GP). In April 2012 he had a massive upper GI Bleed and was rushed into A&E and admitted to hospital gastro unit where after an endoscopy they found 7 bleeding varices and informed us he had liver disease and confirmed as cirrhosis by ultrasound scan and biopsy. This came totally out of the blue (ok some of the other symptoms were there like nose bleeds, tummy aches, erectile issues and irregular bowel habit .......... all typical symptoms of stress etc. Though looking back and looking closer he also had clubbed fingers, spider veins and not so obvious jaundice).
We were already engaged but seeing him in the high care unit I would have married him in the hospital had it come to it and I informed him there and then we were getting married as soon as he came home and we started putting the plans into motion and married in August 2012. It is best to have a side kick to get through tough times together and two pairs of ears are better than one when it comes to digesting all the facts and issues which come up during consultations although you no doubt need to find the right person. Living with liver disease is no picnic for either of us but we stay strong, we are newly weds who sadly due to the hormonal issues associated with the condition have never slept together. Hubby is only 52, I am 40 and really this is the first proper relationship either of us have had so that is a big deal, coped with through lots of cuddles.
My hubby's condition was brought about by some sort of auto immune liver disease name never as yet confirmed but as a life long tee totaller and very fit and active person it was a massive shock and he does get down about not being able to work now through the lethargy and the muscle wastage. He was a welder for 30 years in heavy engineering and there is no way he could bend now and spend his life on his knees,dragging cable and welding sets about. The loss of income and the loss of independence have hit him hard, living on benefits isn't the brilliant life that our current political leaders would make out.
Like you he now has to have regular blood tests to check all sorts of levels for liver and kidney function, potential cancer indicating chemicals and such like, he also has anaemia being treated with iron tablets. He receives no treatment for his liver just for the side effects - he has portal hypertension which is what caused the varices to burst in his oesophagus and he has to go through regular endoscopy's and banding to repair or try to 'obliterate' these.
What you've obviously had is treatment for your Hep B to prevent it further damaging your liver and hopefully you are feeling healthier without the effects of your hepatitis. Sadly if you already have cirrhosis then it is irreversible damage. If you are getting on with life without too many major side effects then you have compensated cirrhosis - your liver is doing most of its required functions. If it starts to become decompensated then it is struggling and with decompensation you may well find yourself under assessment for transplant. We've been told that some patients live normal life spans without major issues even with cirrhosis but others do become seriously poorly whereby a transplant may be the only option but it is one of the most successful of the organ transplants carried out and medical science is advancing all the time.
My hubby hasn't been assessed for transplant as he is compensated at present but in June of this year his care was taken over by the transplant team in Edinburgh who are now monitoring him closely. He has regular blood tests and the ultra sound every 6 months - yes it is to check for signs of possible cancerous lesions (which if picked up quickly as they will if test is done so regularly is largely successfully treatable - cirrhotic liver tissue can be prone to lesions forming), the ultra sound also checks the health of your other organs like your spleen and kidneys and for any signs of fluid build up which is a sign when things arn't working so well.
It is a tough condition to live with but live you must, don't give in to it, eat well, stay strong, do what exercise you can manage to keep yourself as fit as you can, rest when you must, seek medical help and push for help if you think you need more or appointments arn't appearing when you expect them too. Own your condition, before consultations make notes of what you want to ask and record the answers, if possible get someone to go with you to appointments. Chase up results, don't wait for them to come for too long. Stay around on this forum as you will see everyone is friendly and someone will no doubt have experiences which will help you.
If you haven't seen a liver dietician, ask to see one. I've got a copy of very easy to read and follow liver diet leaflet provided to us by the SLTU if you want a copy send me a private message and I can email it to you as you need to eat to look after your liver too. If you enjoy booze I would suggest you think seriously about cutting it out altogether - your compensated liver will not stay that way if you assault it with alcohol. Salt is also dangerous and can lead to fluid build up so a low salt diet is recommended.
Anyway enough already, that's a somewhat lengthy reply to your post,, there are loads of us out here either in the same boat as you or caring for loved ones in the same boat and we all look to help one another.
Take care Tim and all the best, stay on board and you'll find support and encouragement all the time.
Many many thanks Katie for your reply. I was similar to your husband that I went through a tough period in 2011, I probably suffered from depression for a while and therefore ignored things like tiredness, itchy legs, pains. Yes, please do send me the leaflet (I will drop you an email soon) and I will probably stop drinking altogether (My consultant did say that a few drinks were fine and I was pleased!). Yesterday was a hard day. I, however, will not be beaten by this condition and will try to live my life to the full!
PRIVATE MESSAGE - please forward to AyrshireK
I am a fellow member of the Forum
Could I possibly trouble you please to email me (when you get a spare minute or two ) a copy of the SLTU diet sheet to which you have previously referred?
My email address is email@example.com
Many thanks and Happy New Year
Have replied via email, hope the document opens for your Peter and that you find it of use. All the best. Katie
I totally agree, I have advanced NASH cirrhosis, I was diagnosed in 07 from biopsies. I dont drink and other than 1 time have never even beeb legless!!! My liver is very damadged with all the extras that involves, ironically it was my ex husband who was the heavy drinker!! I have too many other health issues so a transplant isnt viable at the moment and may never b, I have found that the little things that happen around me, eg my kids or grandchildren family and friends have become much more important and I enjoy it all much more than b4, and I have found myself more and more grateful to have them in my life, sounds hippy ish I know but its got me to a place where I can positively cope with all the c--p that goes with it
I should have said im 50 and have been going to regular hepatic apps since I was 35