cirrhosis, decompensation and cancer

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.

Tim

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  • 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.

    Katie :)

  • 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!

    Tim

  • PRIVATE MESSAGE - please forward to AyrshireK

    Hi Katie

    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 peter1williams@gmail.com

    Many thanks and Happy New Year

    Pwbr

  • Have replied via email, hope the document opens for your Peter and that you find it of use. All the best. Katie

  • Hi Timothy, Sorry to hear about your condition. Just to emphasise everything AyrshireK's response; live life to the full. I was diagnosed with Hep C in 1996 and already had cirrhosis. I'm struggling now with varices but my liver is still not decompensated. So there can be a good, long life after the diagnosis! Go and do whatever you feel capable of doing and don't let the disease rule you. I had the support of a wonderful wife when I was diagnosed. Sadly, she died 9 1/2 years ago but my two sons have dragged me through the years lol. I now have another (live apart) partner who is fully aware of my condition, and have retired early at 61. Try to avoid anything which puts your liver under too much stress like binge drinking and you can have a long life. Good luck, Phil

  • Many thanks Phil. Good to hear your story, for the past 17 years, have you still had any minor symptoms at all? At the moment, I still get some minor itchy skins. Energy level is a lot better and I don't need to take a nap everyday (used to be the case). So I can get on with my work normally (most of the days). However, I wish I could still be fitter. I can get worn out quickly (e.g. in a competition/badminton/swimming). Yes, I was asking myself a tough question that how much time I have left, which obviously was upsetting. I will try to be positive and gather more information from now. If I have any questions, I will be posting here. Thanks again Phil and wish you a merry Xmas.

    Tim

  • I've sent you the diet leaflet Tim and it might help too with your energy levels as it explains about the liver and its work in energy release and with an improved 'liver diet' it might boost the fuel your body actually gets from food.

    Katie

  • Yh I have problems with the varices, feeling as if something is lodged in my throat. I have two large ones in the stomach which can't be banded so I struggle with food; little and often there lol. My liver and spleen are both swollen so bending down is uncomfortable to say the least and low stamina. I do have a doze whenever I can but keep as active as I can. Nothing that I can't live with. All in all, I consider myself quite lucky and hope to go some years before I finally have a major problem with the liver. Can but hope eh? Keep your pecker up and have a good Xmas

    Phil

  • Sorry to hear your news.

    Unfortunately once you have cirrhosis you can decompensate at any time.My husband was five years from diagnosis of cirrhosis to needing a transplant. When they removed his liver it was full of Hepatocellular Carcinomas which had remained undetected.

    He is now 2 years post transplant and no recurrence of cancer anywhere at present.

  • Thanks Carmik. I hope your husband will be better this time. Thanks again.

    Tim

  • Hi Timothy. I too have chronic Hep B and cirrhosis. Its good that you have responded to treatment and are now undetectable. Remember to keep taking the Tenofovir, you must not miss one day of this drug. Ever. For ever. If you do this you should remain undetectable and hopefully the cirrhosis will not progress. I would however recommend stopping drinking altogether, even though your specialist may have said its ok to have a drink now and then. We are never 'cured' of Hep B, it will always be there, just suppressed due to the drug. So your liver needs lots of TLC (the Hep B meds are strong and your liver is having to process the toxic waste from those, so why give it more toxic waste in the form of alcohol). Stopping drinking may help a little with your fatigue.

    Just because you have scans every 6 months doesn't mean you WILL get cancer, but people with HBV and cirrhosis are more at risk of liver cancer, so the medics screen you in order to spot it early. So be glad of the scans not depressed by them, they are keeping you safe.

    Re the fatigue, this comes with the condition, so listen to your body, rest when you need to and if you need to just play badminton at a social rather than a competitive level, so be it.

    When thinking about a partner/marriage/kids, HBV is unfortunately passed on through unprotected sex, so you need to talk to your specialist liver doctor about this.

    All the best.

  • Timothy, I can't answer your medical questions, but I have a friend who has had a heart transplant, and based on her example, I'd say don't write yourself off even if you do have a life limiting condition. If a relationship comes along, go for it. After all, any of us could be hit by a bus tomorrow!

  • Many thanks Annastasia for your kind words. Yes, I had a bit rough weekend after the appointment. Now I am feeling better. I am not beaten by the condition yet :) Tim

  • Hi, I couldn't help but notice how touching this was. I myself have cirrhosis which has been diagnosed now for nearly 3 years although it is well compensated at the moment. I was told myself that it was nearly impossible to have a family of my own as I was 19 at the time and liver disease often leave the individual unable to have children. This was obviously very hard but I did prove my doctors wrong as I have since had my own little girl who is both happy and healthy.

    The point I wanted to get across is that no matter what your outcome, there is still an eventuality, no matter how small, that you could have a family of your own. Keep positive and well, especially over Christmas. I hope everything goes OK for you and have a great time over Christmas :)

  • Thanks Jessica, I heard on the news today that the longest heart transplant patient is 71 this year. He was told he could have only 5 years to live and he managed to live 31 years. Life itself is such a miracle. I wish a very happy new year ahead. Tim

  • One of my best friends has had a heart transplant and knows this guy (they're a support group at Papworth). She's now 5 years post transplant. I've also met the first guy to have an artificial heart and he's in fine fettle too. It's not an easy path as the meds are horrendous, but then again, my friend is glad to be alive. She was actually in the hospice with under a week to live when she got her heart, and it wasn't in very good nick, she was warned. She's has side-effect problems but she's still here - not bad for a woman with a week to live :)

    Not saying transplants are the miracle the press makes out, but they are becoming almost routine. Once they can grow organs in a lab, and there's no more supply problems, I'll bet they'll be even more routine. And for those that can't have a transplant, I hear they are very close to having a viable artificial liver machine, a bit like kidney dialysis. So reasons to be optimistic for many of us.

  • Hi chap I had hep c and went on triple treatment t for 12 months . My liver was already struggling but this strain turned my liver to cirrhosis , I was then put under the care of Birmingham hospital liver unit I was put on transplant list. The hep was undetected by now but the treatment decompensated my liver so much. The cirrhosis then turned to cancer and three tumours were found on my liver by MRI scan.

    I was then put on urgent transplant list as at the time the tumours were 2.5 cm and when they get to 3 cm they can't do anything. Luckily the cancer was only on my liver and hadn't spread. I received a transplant in April this year and am doing fine now. Back at work full time etc so don't give up hope. Good luck

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