Would like to hear from members who have pbc with cirhossis


I really would like to chat with someone who has cirrhosis. I have been diagnosed with cirrhosis after 20 years with PBC .......unfortunately it has come in strong with a bleeding and hospitalization. I know most people on this site are still on the early or mid PBC stages so I dont want to get them down,


16 Replies

  • Hi Valmanning. I was diagnosed in 2007 and at that time was stage 2/3 and am now in stage 4 and have cirrhosis. Had a fibroscan last year which gave a reading of 35, meaning the liver was becoming fairly rigid. I have had not bleeding yet, thank goodness but do have many others symptoms and attend the transplant entre every 6 months.

  • Thanks crich ....my fibroscan was 15 but it has probably changed!

  • Hi Valmanning

    Sorry to read that you have moved into cirrhosis stage. I am not at the same stage but wanted to drop by and wish you well. Hopefully you will be on the transplant list and will find a match. I hope someone on here has had some experience and can be more help. In the meantime there is a page on Face Book called Living with Liver Disease run by a chap called Craig Cameron. There are a lot of people on that site with various liver disorders and a lot of experience. He also has a web site which you may want to take a look at, it is not directed at PBC but is inclusive of many liver diseases.


    Don't know if this will be of any help but I hope so.

    best wishes

  • Hi again....I looked at the site but I think it is rather scary.... The symptoms are so awful. Just a warning if people look into the site...it wont be good reading........but if you are up to it, yes its well written.

  • Sorry Valmanning did not think about it being scary but I should know better. Hope you are not to unsettled by the contact. Again apologies and best wishes to you.

  • Thats Ok ......thx

  • Hi Valmanning!

    I was diagnosed with PBC last year, and a biopsy and a MRI both confirmed i was in stage 4, cirrohossis, i am so sorry you are experiencing bleeding, i assume from the varices? Have you considered banding? Do you know your MELD score? There is so much that can be done to help with pain, quality and quantity of life! I met the loveliest person in the waiting room who has had cirrhosis for a decade and is going strong without needing a transplant! My protocol calls for a MRI every 6 months, an endoscopy annually, and bloods every 6 months. I took Peridot's advice, and have tried a healthier diet, limiting salt and sugar, and walking as much as i can. I really believe it has helped my energy levels and outlook, and relieved some of the pressure on my portal vein. I wish i could help you...it can be so scary and lonely facing this. Please know I send my best wishes and prayers your way!

  • Thank you so much for replying. My varise the guilty one that is..I have three small ones..has been banded and will be rebanded in 3 weeks. I thought i was recovering from the bleed and hospital but today I am weak and as I felt when I came home 10 days ago! .......I just want to get strong again. I eat healthily and always have so I dont think its that...perhaps it takes time. Good luck to you.

  • Just saw a blog regarding banding bleeding varices from the British Liver Trust on this site, but the entries were in 2013, and not specific to PBC. Seems that the fatigue following the procedure can last weeks, but also cautioned that there could be an infection which also could cause fatigue...any chance you could see a doctor before your three week rebanding date just to be sure? Also google the "American Liver Foundation varices." I saw info there that may be helpful. I apologize that i lack the skills to give the web address....because i joined the site, it just shows team inspire on my tablet.

    I so prefer healthunlocked to all the other websites. The others, while factual, lack compassion.

  • Many thanks ..had a blood test 2 days ago and nothing showed up except lack of iron which I knew...will look for the sites you mentioned ..thx

  • Hi Valmanning,

    I'm Stage 4 with a fibroscan result of 30 (not that far behind you), and dealing with the same complications that you are, except, though I have varicies, I haven't had a bleed as yet. I think, at the moment, I am more scared of that happening, than I am of anything else that happens in the later stages of PBC.

    I was diagnosed 27 years ago, have been on Urso for the last 20 years and must admit I was shocked when I first found out I had moved into cirrhosis stage. Shocked, why? Because my then Gi kept telling me that all was fine, due to my LFT's being "near normal and stable", even though I had been feeling very unwell for a number of years prior. I changed to a Hep. doctor who sent me for an ultrasound which showed cirrhosis, after he picked me up off the floor (grin) he ordered a fibroscan which gave a reading of 30. Now, like you, I have six monthly ultrasounds, yearly endoscopes, three monthly blood tests. Oh, and obviously, due to the cirrhosis my enlarged spleen has decided to hang on to my platelets - platelet counts are now ranging between 80 and 75, x10 9/L, normal range here is (150-400).

    Not sure about you, but extreme fatigue is something I have to deal with daily, but, if you want to "chat" I'm open for that, just remember sometimes it can take me a while to reply.

    Take care.

  • I was diagnosed with cirrhosis in 2013 from a biopsy done in late 2012. I had endos annually until this year. I needed a banding in January but was too sick, something going on in lungs. Back n forth, my primary doc said you will have to go and be intubated . Do not wait for pulmonologist to approve. So i contacted my HEP and he did it right away intubated. All went well, took some extra time to get oxygen level back up but was ok. Same thing a month later, more bands needed. Then i had a small bleed and stayed over night in hospital needing no tranfusions. Went back next minth had just one very small varix that he said he would normally just let go but banded mine and gave me three months til next endo. All was fine, went for the three month check..........they tried to band one and it would not hold because my esophogus is so scarred from scleroderma. I began to bleed badly. Minnesota tbe inserted to stop bleed, 4 units transfused, prepared me for life support and transport to the main hospital critical care. My Hep wanted a TIPS done asap but there were many complications including an infection so they were trying to stabalize me. Three days in and i began to loose even more blood.....more transfusions and hubby told to call family as i was not likely to make it. After 8 days of induced coma and a succesful TIPS done i was awakened. You lose alot of muscle in that state. I could not bring my hand to my face, hell i could not move anything or speak without major stuttering. Spent another 9 days in hospital recovering. I improved greatly but still struggling walking and standing long, i just keep at it adding more each day. My fatigue is worse than ever and it was already bad. They tell me it will take a few months to regain everything.

    It is tough to deal with but these are the cards I was dealt so I just mosey on and try to be happy and enjoy every minute I have with my family and friends.

    Anytime you want to chat i will try to keep up. Just know you are not alone and there are some awesome people on this site to lend an ear.

    Ps sorry for typos......but this is good exercise for my hands!

  • Hi Bobbycat12,

    Sorry to hear of your hospitalisation. I was diagnosed some 14-16 years ago with PBC and have cirrhosis now. My fibroscan reading was 17 last year. I have 4 columns of varacies but they are well covered for now thankfully.

    Taking Urso 1000mg a day and Propranalol, although I am struggling with the Propranalol and just about manage 20mg a day - should be 80mg! I am increasing my walking now, need to keep as fit as possible and try to keep the heart rate down naturally.

    Take care x

  • Hi, thank you...My varices are banded quite regularly but am down now to two bandings and no appointment for a while...the scarring has made some foods hard to swallow and this will not change it seems. I take beta blocker .. cardivol ..(spelling ) and the only side effect is climbing a hill! Get breathless. Now my stomach has swollen a bit so off for an ultrasound...I have cut down salt now and am hoping that there is not much water retention. I have become tired more often since the varice bleed... I am also more aware of the future.

  • Hope your Ultra sound goes ok, I find the beta blockers make me tired and no motivation, hence me making myself walk more.

    In terms of foods I am finding that I cannot tolerate greasy cooked food, I don't usually eat fried food but have been caught out a few times of late and it really did not agree with me. My stomach did swell as a result but went down after a few days. Thing with PBC is you get so paranoid thinking its related, but it could be IBS or an intolerance?

    I do tend to bury my head a little, emotions are like a roller coaster - but always positive :-) x

  • Thank you......I am hoping it is something else!

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