Who out there has had pbc for over 20 years? I was diagnosed at stage 3. Have had stage 4 for 12 years.

[Zoose]

I am 65 years old now. Is it time to think of transplant? Stage 4 cirrhosis for about 12 years. Meld score is 11. I have all the internal problems that come with pbc and fatigue is getting worse along with leg and body pain. This disease is difficult for family and friends to understand because I don't look sick. I am not sure what my family will do when things go bad. They think I am fine. I have had pbc for a long time but remember the day I was told I have a liver disease like it was yesterday.

[Hidden]

Hello Zoose.

I am in the UK. I was diagnosed with PBC almost 5yrs ago when I was 46. I have no idea regarding stage of PBC as I was diagnosed by symptons (itching and at the time fatigue), abnormal blood work and then it was found I had a high titre of antibodies, the AMAs. In the UK a biopsy isn't normally performed nowadays unless there is a doubt re diagnosis.

I started itching early 2010 and I still have itching though not 24/7 like it was during 2010. Fatigue left me sometime during 2011. Apart from my skin taking on a mild bronze colour in certain places where I itch a lot and my skin seemingly tanning slightly darker furing the recent summer months, I look quite normal. My bloods are still abnormal but nothing like they were during 2010.

I did think that it was up to a consultant to decide regarding anyone being a suitable patient for a liver transplant in PBC. I have heard of the MELD score.

It is said that even a patient with PBC reaching a cirrhosis stage that they can continue to live an adequate life and that can last for many many years and in some cases it not progressing even further.

I don't think about stages of PBC. I am confident that it can be known from an ultrasound scan. (I say this due to a tv programme I saw live on air a couple months before I was informed I had PBC as it showed on the programme 2 men and one was said to have fatty liver disease due to being quite overweight, the other was an alcoholic and he was said to be in the cirrhosis stage. The doctor pointed this out on the scan.)

I came to a decision after the initial sinking in properly that I had PBC and it would have to be dealt with for the rest of my life, the taking of urso (or something else if it came along) that I'd get on with life, not think about what PBC might become and just deal with things as and when.

Have you spoken with your doctor to discuss how you are feeling and you might get more of an insight into when you might be put forward for a transplant.

[Zoose in reply to Hidden]

Thank you so much for your reply. I am scheduled to see my doc this month. I am doing bloods every 6 months now. Here in the US they don't do many transplants after 70 or 72. That age thing just seemed to creep up and it sometimes take years to get a liver. A donated liver is another possibility but would be a very hard thing to consider.

[Oscardog in reply to Hidden]

Hi, I think things have changed, consultants now say it can progress to cirhossis which it does in many cases and It is best to know this so you can plan to make the best of your life. Believe me though life changes a lot with cirhossis, it is quite different.

[butterflyEi]

Hi Zoose

I was diagnosed about ten years ago but because I now know the symptoms it was pretty obvious I had PBC a lot longer. I have never been told about stages (UK) in fact I have not seen a specialist for over 5 years and had my bloods done for the first time in about 5 years earlier this year, this was at my request. I understand totally about "the family think I am fine" statement, I always look really well and I try not to complain - well not too much

I am 64, sometimes people tend to put things down to the ageing process and I do also. However for you I think it is time to have a chat with your medical provider and at least get on the list if this applies in your area.

best wishes to you and I hope if you do go to transplant that all goes well for you.

[Zoose in reply to butterflyEi]

I understand where you are coming from. You need to take care of yourself and take the right drugs. Are you on urso? I can get done really easy and feel no one gets this. Hard disease to explain.

[butterflyEi in reply to Zoose]

Yes Zoose I was put on Urso immediately and soon after was in the fortunate position of retiring early as my husband had retired. We went travelling for 3 months, great fun. The wall of fatigue rarely catches me as I am able to pause when I need to but would much love the issue of the itch to be resolved. Currently trying something different and will post if it is of any value.

best wishes

[Hidden in reply to butterflyEi]

Same here butterflyEi. The consultant at the hospital after he diagnosed me with PBC just said he reckoned I'd had it 'a few years' and he never mentioned anything about stages of PBC and I too am in the UK.

He just briefly chatted about about PBC and then ended with in 'some cases' this can 'lead to transplant'.

I don't know of age cut-offs for transplants and it seems to vary between patients even in other health areas. I also think it depends on how you are at the time probably. I won't get started on how I disagree with alcoholics for instance being candidates for liver transplants and years a go a very famous footballer had one and then went back to drinking.

[Oscardog in reply to Hidden]

Hi

Age cut off is 70 to 71 in London. I know because I will need a transplant and time is running out as I am 67. I have stage 4 cirrhosis..

[Oscardog in reply to Hidden]

Everything one has the right to a new liver.

[Oscardog in reply to Oscardog]

Sorry everyone has a right to a new liver..typing error. peridot, I dont think we can say who can and who cant get a new liver. I never drank but I have known people who do...it is an addiction and no one can judge on that.

[crundalite]

H ello Zoose,

I am 69 and was diagnosed about 20 years ago. I was told about 18 months that I am now at end stage (4) with Cirrhosis, portal hypertension and varices. This came as a shock as I had never given stages much thought and had been very active with gym 3xweekly as well as dance class. I received differing opinions on how long this stage can last-from 2-10 years but I think no-one really knows! Beta blockers took away much of my zest for life since then but I have now come off them and find my joy in life, if not my energy levels, fully restored. I was told that I did not need a transplant and after the age of 74 I would be unlikely to receive one if I did. Too risky apparantly but each case on individual merit. I have had oesophageal varices treated, more as a precautionary measure than one of urgency. Talk to your specialist/medical adviser but get on with your life as much as you are able . It is brief for all of us whatever our circumstances and we only get one shot!

Good luck

[Zoose in reply to crundalite]

You are right no one knows about the length of these so called stages. I think it varies from person to person. I was told the beta blocker keeps the pressure down in the veins to help the varices from getting worse. When you get to our age it probably best to just live the best life you can. Thanks for your reply.

[crundalite in reply to Zoose]

Hi Zoose,

You are right about the beta blockers-they are to prevent the varices from getting worse. Unfortunately I have mild asthma problems which were exacerbated quite badly by Carvedilol leading to great difficulty breathing and I could hardly walk. I first tried Propanolol but this slowed me down considerably and even affected my usually quite sharp brain processes. I became quite depressed. I have had varices banded but have been told they can occur anywhere in the body. It is not advisable to stop taking them probably for most people. I just feel I would rather really live the time I have than be half alive! As yet I have no ascites. I do know what you mean about people thinking there is nothing well. I saw my Gp recently who always tell me how well I look. My family the same. Ah well, that's how it is! Good luck with your quest.

[Hidden]

Hi, I was diagnosed 27 years ago, while we also don't 'stage' here in Australia, going on the results of my first biopsy's results, I was probably in Stage 2 when first diagnosed. I have now reached cirrhosis stage (Fibroscan result of 30), and as you, Zoose, I have all the complications attributed to liver cirrhosis.

I don't know my meld score, not even sure if I would even have one because none of the relevant components of my LFTs, i.e. bilirubin etc. have ever been above/below 'normal'. So unless something drastic occurs i.e. LFTs go mad in the next year, I doubt I will be offered a transplant - I've just turned 69 and the cut off for transplants here in Australia is 70.

Now, my cousin was also diagnosed with PBC the same year I was and she had her transplant last November (she's doing very well) - I'm originally from the States, and my cousin lives there, so I can only talk of her experience in the States - her Meld score had to be above 15 before she was even considered for a transplant. Due to the rise and fall of her Meld score over the last few years she was on and off the transplant list a number of times. By the time she received the transplant her Meld score was around 20.

I agree with crundalite about making the best out of life.

Take care

[Zoose in reply to Hidden]

DianneS. How long have you had cirrhosis? Do you have any fluid retention? What are your platelets? Bilirubin? Lots of questions I know, but I have had cirrhosis for a long time and just kind of hit me that this cannot go on much longer. How old was your cousin when she had her transplant? My mother had pbc also. I just was told about this meld score last year when I had my checkup. Have you had varicies cause problems? Where did your cousin have transplant? Thanks for your response and would love to talk more.

[Hidden]

Okay, for starters, my cousin is 6 months younger than I, so she was 68 when she had her transplant. She had her transplant in Kentucky.

Now, questions that I can answer about myself - my platelets count was 70 three months ago (I have only just had my blood tests so do not have the current results. My bilirubin has always been in the mid range of 'normal. No fluid build up as yet, an I will be having my first endoscope in two weeks - I'll let you know the results of that when I get them.

I have to go out now so will answer in more detail later.

[PurplePBC]

I first started showing signs in my late teens, they started tests then but gave up after all when they couldn’t work out what was wrong with me. Then started up again in my mid 20s where they finally diagnosed me. I’m nearly 45 so my diagnosis is 20 years old this year. I’ve now got AIH and steroids probably accelerated my bowel to perforate with my diverticulitis so I almost died last year. Now got a stoma. Old way before my time. I was told at 25 I’d have 7 years. Last year I was told it was unlikely I’d survive the operation and even if I did I would be in intensive care fighting for my life. None of that happened. I’m a mess but essentially doing well I guess. Would prefer to do much better than this. My PBC is not under control apparently but not at cirrhosis level yet.