Been told PBC now advanced to Cirrhosis not good news i know this stage can be so different for everyone but if you to are at Cirrhosis stage can we still stay stable for a long time before Transplant can you tell me how long you have had Cirrhosis hope we can have a lot of years in front of us before things get worse funny part is feel really well itch not causing to much trouble so really upset with this news also had MRI scan results and Bile ducts looking good liver and spleen slightly enlarged bloods just slightly raised but platelet count 78 so very low Grade 1 varices and mild Hypertensive think ive got it right would like to hear from anyone at same stage can not help but worry sick im not round long before Transplant oh no please not yet so much to look forward to in the next few years .Take Care all in 2016 XX

23 Replies

  • Cavi, I hear you sister !! I too found it very difficult to come to terms with being told I had cirrhosis 4 years ago and it took some months before I came to grips with it. I found it a significant mental leap but I took the leap eventually and now try to carry on as before.

    My consultant has said I will need a transplant one day but when that "one day" is, he can't say. All we can do is hope for the best and be as ready as we can when/if that day dawns !! I have found it helpful to set smallish goals for myself, for example...The youngest of my 4 children is finishing school this year ( she was only 5 when I was diagnosed) and if we get to the end of 2016 where I am still in one piece, I will feel very blessed.

    Anyway, it's a tough gig and I'm not trying to sugarcoat it but really have more than an inkling of how you feel.

    Here's to keeping on for as long as we can Cavi !


  • Just written a rambling reply...l havelost it!!!! The post not the plot ha ha ! Although not unheard of!!i am 52 also 4 children youngest just started college...know exactly what you mean its a big milestone when they finish that bit.

    Prob only 2 more schoolparents wishes cazer.x

  • Thank you is a significant time isn't it.

    All the best to you also.

  • Was yours a slow progression ?

  • Ahh, I'm not sure compared with other people.....I was diagnosed 12 years ago at 38. Liver biopsy revealed stage 1-2 at that time and I must admit I almost forgot I had PBC for the next 7 busy, as you would know raising 4 children and working as a nurse. However, 5 years ago I began to feel much worse, LFTs deteriorated significantly and biopsy revealed progression to stage 4/cirrhosis - reinforced by MRI,US and Fibroscan. So the timeline has been at least 12 years cazer....what about you ?

  • I was diag 1999 at 36 but was straight into stage 4 ...started my 4thpregnancy okay normal morning sickness...then i had what i thoigjt was a couple of nasty viruses then had terrible itching nausea sickmess...loosimg hair etc and spent rest of pregnancy either in bed or in hospital as soon as moved much blood pressure up and coildnt hold any food stopped growing at 45weeks so i was induced ...luckily we both survived although it was a bit scary after i had a bleed..

    Hb was 6.8afterwards!!!

    Unfortunately it turned out to b glandular fever and pbc and i never got my pre that health back but the combination of the 2 things did not do me any favours!!!thats putting it mildly.... i had to have homehelps which i fought for as i was determined that my older 2 children would not b carers for the litlle ones and i and both sets of grandparents were not wellenougj to do much.on the positive side ive survived to see them grow up...i just kept thinking that i could have had liver cancer it could have been a whole different story.!!!but after 17yrs of feeling ill and struggling i am ready to be put forward for assessment..i dont want to fall before i have the chance of better health!if you get what i very proud of our kids who have done well despite all the difficulties theyve had to deal with and of course my long suffering hubby who has worked fulltime(or weved have lost the house) and has to cook teas get 4kids done and delivered ti school child minders etc before he even started his work day.sorry for rambling on but only someone with 4children and pbc can have any idea what a crazy combinationit can be! Best wishes cazer.p.s. i was a dispensing opticianbefore being ill...and did miss my job which i loved.

  • You sound as though you have had a very difficult time cazer and I admire your grit and that of your family to keep on pushing through ... Your husband sounds marvellous ! My husband, too, is absolutely superb & has supported me every step of the way as have my children. Fatigue is my biggest issue although managed to work as a nurse in a public hospital until recently... Looking for something less taxing now. I wish you all the very best.. Have the docs spoken to you about transplant assessment or do you feel you need to have that discussion ? Take care.


  • Thanks so much for the kind comments i afraid ive had my far share or crying and getting angry in frustration at what i cant do.or sitting there counting the hours feeling like death warmed up just till someone else arrived yo take over but now obvoously my kids are all bigger i can pace myself much must have found nursing hard!!as its so physical and no let up.what sort of work would you like to go into?

    As for the transplant ive ask several times previously due to awful fatigue but was always told not ill enough..

    Went to qe in nov and consult said tjat they would see me in 6myhs asnormal at that they would just eye on bloods but later that week i got new appt for feb(3 months) and when i got letter he said ukeld 50but bloods bit worse so would hold off assessment for moment but would see how i am in feb.i think things are progressing as now gave spider veins on cheeks and bowels all over the place...had probs anyway but worse now.i just hope they get on and asess me in2016but i know they seem to make u wait till bad enough!!!crossed fingers for feb..

    I know its risky but my odds arnt good anywY with grade 2 varices! etc.sorry rabbled on again

    Which hosp do u go?cazer

  • I'm a long way away from you in Melbourne, Australia!! I attend the Austin Hospital for scans etc but see my Dr privately. Is that the MELD score you are referring to ? Is 50 considered very high in the UK ?

    You do sound very unwell cazer....I really hope your appointment in Feb gives you clarity and hope.

    I have Portal Hypertensive Gastropathy but no varices as yet....why do you say your odds are not very good ?

    Please don't's good to hear your story.

    Coincidentally, my 21 yr old son is flying to London tomorrow to take up a semester at Warwick University...which part of England do you live in ?


  • Oh wow! Dont know why i assumed you were in pbc foundation good then compared to other sites?

    Ukeld used to b meld but now adds in another blood test.49 is the level at which you can go on list.what figure do they use over there?shouldnt be pessimistic but 10%chance of dying within 22%of people die while on waiting list hence my keeness to not b left too long..we have a shortage of donors over here so thats the problem

    How is the donor situ with you .?

    We are unfotunately quite a way from warick...if youve heard in the news 2yrs ago about the somerset levels that flooded we are about an hour from that.if you look at the map we are on the bottom left leg as you look at map tjhe higher coast side a little village near hinkley point power station .

    ..quite controversial as nuclear!!! We cant see anything of it from where we are as lots of trees an afew hills.

    What is your son studying?my eldest 26 did workimg back at uni and daugjter 24 is a physiotherapist.warick has very interesting buildings / he doing english or history by any chance?do speak to me if he needs help on the phone etc cant do much physically but perhaps nice to know there is someone in same country who he can talk too.i think the unis are pretty good over here for looking after their must b excited and nervous one for him.i hope he has a great sons girlfiend did 3 months in new zealand as she was training to b a doctor and got tje chance to take a placement out son went to join her for an extemded hol after her stint he loved it but shes a bit of home bird otherwise i could have seen them moving out quite upside downwith my sleep which is why im chatting at what is very early am here ! How does trans system work in australia?bw cazer

  • Thanks for your kindness cazer. My son is doing a Global Arts degree here and is taking history/international politics subjects during his stint at Warwick Uni. He's travelled quite a bit for a 21 year old so should be fine although we are missing him already ! You must be very proud of your children and how well they've done.... I think the donor system is probably similar here....I know there is a complicated figure calculated using various factors, including bilirubin, clotting profile and others which acts as a trigger to put one on the transplant list. However as I am not there myself I am unsure of all the details.

    I have my fingers crossed for you

    Take care

  • I found out in 2013 that I had cirrhosis. It is now more advanced but I have been told as liver is functioning quite well I am not considered sick enough to be considered for a transplant. Apparently unless you are in liver failure stage then you won't get a transplant. My platelets are also very low but consultant doesn't seem bothered. Having said that he doesn't seem bothered about anything except research. I am always being told that they will know when you need transplant so try not to let it rule your life. It's hard but we give so much up to this disease so don't let it take up any more time than necessary. Let's hope 2016 is a good year for all of us x

  • Hi cavi , Cirrhosis is a scary word and comes as a great shock even if, like me ,PBC has been around for 20+ years. I think what makes it harder is being led to believe that the condition only arises in a few. It doesn't'

    Judging by posts on here there are quite a few of us around. It seems to me that the "how long " question is impossible to answer. I have portal hypertension, have had prophylactic treatment for varices and receive regular checks for any changes there. I am told I am compensating well but lack the get up and go I had 2 years ago when I was told. Difficult I know but try not to worry too much. You may have 10 years or more yet before txt. At 70 there is only a limited amount of time before I will be too old for txt to be viable. Seize the day!

  • Thanks all for your replies thats just it who knows how long before Transplant time but according to my Consultant at Q E his words was looking at all your results as they are now i would say about three years then it will be time for one is he that clever to know how things are going to go in the next three years so shocked when he said that i just went numb and and mind just went blank to ask him how he could tell any one else been told this and proved them wrong xx

  • It was QE who told me about 2 years-that was two years ago. I have seen 5 different consultants there and they have all told me different things-most of the others saying this 'end stage' could last 10 years or more. I really believe that, as with other conditions, no-one can really forecast 'how long?' Like you I always believed that the need for TX would allow ample time to plan it but perhaps PBC foundation could better help

  • Thank you again for your reply when ever i go to Q E i always ask if i can see the same Consultant Holt and usually get to see him may be when i go in a couple weeks i should see some one else have you ever seen him he dosnt mix his words but wonder if that is a good or a bad thing the worrying bit i think he knows his stuff xx

  • I was told 17 yrs ago that may need one in 5/ yes it is almost .

    How longs a piece of string although this was before urso had a track record as it was prettynew at this own personal.opinion is that it also depends on what events hit your system....ive had glandular inthe past that they tjink knocked mine on was also pregnant at time got diag after this.have had stomach ulcers and a lot of worry this last year so sure that hasnt helped me.also lot of dental probs.i think oursystems are less resilient to bugs etc.i now going back infeb and am borderlime to b put forward for trans assessment but even now its wait and see how u r .i just want to get listed now as im 52and lost alot of yrs unable yo do son has never known me well so would dearly love to have chance to do some stuff with him although he mayfeel thats really uncool with a 52 yr old!!!

    If you still feel well then make the most of it do look after yourselfbut have some fun and do some nice stuff if you can.blow the housework do enjoyable things.please dont put yoir life on hold because of what migjt b in thefuture.

    We had a wonderful cruise..courtesy of credit card which i know os really bad but i just felt we needed to go as i migjt not get the chance not just cause of health but imsurance etc.i sooooo...glad we did it our yoingest son came and we all had the most brill time despite my crossed fingers for continued stability for you and enjoy yourself.verybest wishes.cazer.

  • Hi crundalite do wonder if we only hear on here from the people witj symptoms/questions.i dont know if i was completely asymptomatic that id b posting!! Its just a thought.last yr i was told same thing if livers coping they will not list...but at 6mnth check in nov bloods had started to move more in wrong direction!!!!!so lve been called back 3months earliet in feb and consult said he would hold off with assessment until he sees me then and see how lmgoing

    So although ive been like this for 17yrs its still a bit of a shock as ive know i had damage to myliver yrs ago.... but have been told so many times not ill enough for transplant which ive struggled to get my head round as i was not well enough to return to work but i had glandular fever whilst pregnant and they thimk it was that that suddenly knocked mine on drastically..this seems to.b more unusual i think.did you have gradual decline?best wishes.cazer

  • Sorry should hav address that cavi apologies to youboth...lack of sleep !!!!.x

  • Hello again cavi

    Same consultant that I saw first time and same anxiety provoking response. I was devastated as was my husband and family. I'm still here!

  • Thank you so much crudalite you have made me feel so much better sorry to hear you had the same shock as me with the same Consultant it really plays on your mind even said to my husband better make this our last summer holiday this year how sad is that like you said he told you the same and you are still here have you been stable all this time when he writes to my GP with results they usually say this patient is stable and remains feeling well hope this lasts for a long time although at a Cirrhosis if late stage Thanks for your time xx

  • I really do feel for you and recall the despair I felt initially 2+years ago. I have since re-adjusted and continue to live my life to the full, enjoying travel, art and a variety of other things as well as my very precious grandchildren . It was the thought of perhaps not being around for them that really crushed me. I was at the peak of my fitness , attending gym 3xweekly and Zumba 1x weekly when I had my 'terminal' diagnosis. I no longer am , largely as a result - of beta blockers which I struggled with for about 18 months. The first made me feel as if I were walking through very deep water all the time and the second increased exsisting respiratory problems. I am definitely less fit! otherwise I pace myself according to how I feel but am generally involved with all sorts of things! I do hope things go better for you. I found Prof Neuberger very helpful and Dr Hirschfield is the PBC specialist at QE Bham. 4 hour journey for me so have asked to go only once a year. Will be looking out for your future posts.

  • Cavi, When I was diagnosed in 1997 with AIH I already had cirrhosis----no idea how long for but had been unwell for many years with "M.E." Since then I have been diagnosed with PBC as well as AIH but am still quite well and active. (I am 74 years old).Try not to worry too much but find some things to do which occupy your mind eg good books to read, sewing, tv programs or whatever you are interested in.

    I wish you well in the future.


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