PBC foundation about cirrhosis, same experiences?

[Suzie38]

I found this information about cirrhosis in the leaflet 'living with PBC' from the PBC foundation. If you have cirrhosis, do you agree with the vision showed below? Is the cirrhotic stage indeed just of 'relatively minor importance'? In my last appointment my hepatologist told me that my cirrhotic liver won't last forever, but I'm not given a time span. Despite that fact, it was told like something that's inevitable and in my opinion, it doesn't correspondend with the text below. Are there people with another experience?

"In general, the

higher the bilirubin, the more advanced the liver disease and the worse the prognosis. The presence, or absence, of cirrhosis itself is only of relatively minor importance. For example, if someone is being considered for liver transplantation, the presence or absence of cirrhosis would be unlikely to have any significant impact on the timing of transplantation. There are other ways of measuring or assessing the degree of fibrosis and scarring.

It is important for the patient as well as the doctor, to place staging in context. It is

a useful guide to the degree of scarring within the liver, but it is no more than that. Many people with cirrhosis due to PBC have a very good quality of life and indeed life

expectation. Quite a few people without cirrhosis undergo transplantation because the liver is working inefficiently.

My personal opinion is that there is not a great deal of value in worrying whether you

are progressing from Stage III to IV, or II to III, or whatever. The bilirubin will give you the best guide as to how much damage there is to the liver and your own sense of how well you are will give a guide to your quality of life. Histological staging will not help.

Having said all that, the presence of cirrhosis is of some help to your doctor because

there are some complications in PBC which are related to the presence of cirrhosis. For example, those with cirrhosis (from any cause) are at risk of developing varices and so will be offered further evaluation and, if appropriate, treatment to prevent complications. "

[Aussielouise]

I was told even with cirrhosis I may never need a transplant

[Suzie38 in reply to Aussielouise]

Thank you, that gives me hope!

[butterflyEi]

Hi Suzie38

I do not have any real experience to answer your question and I am not sure doctors do either as PBC seems to manifest itself differently with or without other autoimmune diseases to impact on the PBC in different people in different ways. In the UK the doctors do not seem to give stages although in America staging seems to be part of the diagnosis.

I participated in an MRI imaging study of the liver over a 2 year period. During this period I put myself on a diet and with healthier eating and more exercise I lost weight and the reward was that I was told at the 2nd part of the study that my liver was in a better condition than the year before.

As the PBC Foundation leaflet suggests the bilirubin is a good guide to the state of the liver and can be an indicator to possible problems but over the last 20 odd years of this disease I have found that it is my body that tells me best what I need to do and when I have a problem I pray that the doctor that I see will have some understanding of PBC.

best wishes

[Suzie38]

Thank you for your reply. I will ask my hepatologist If I can get a copy of my lab results next time.

So good that you have some improvements in the condition of your liver through lifestyle changes! That must be motivational Keep it up and best wishes.

[Oscardog]

My bilirubin was not too high at all but unfortunately I now have cirrhosis with bleeding varises and minor ascites and other odds and ends...so I think it is an individual thing and I cant agree with what the PBC foundation say...

[Evaibrahim60]

Yes I do agree with PBC foundation. Lived with it for long time about 18 years with no treatment and 17 years with Ursofalk. However I believe that I have developed antibodies against it and in the process of knowing what I must do next! Beat wishes for all for the fight for better life.

[MaireO]

Hi Suze. I don't have cirrhosis but advanced fibrosis. My bilirubin is my main issue. It fluctuates. I have been referred to a specialist liver clinic and monitored every 12 weeks. I will need a Transplant and that will all depend on whether or not my bilirubin gets to a very high point and stays there. That could be next year or in ten years. It's a wait and see.

[PBCRobert Partner]

Hi, Suzie.

I love that you have asked this question and are challenging our information. These types of question help us ensure the best possible service in the future.

In short, what is more important than cirrhosis is progression. In the same way with liver biochemistry, it's not necessarily the number that is important but the trend that brought us to the number.

So, yes it is helpful to know you have cirrhosis but that, in itself, doesn't help in terms of timelines or expectancy. The key is if that cirrhosis is progressing or not.

Even cirrhosis is measured and stratified, with e.g. compensated and decompensated cirrhosis treated differently by expert clinicians. As with Oscardog's reply, decompensated cirrhosis can come with more risks (ascites, portal hypertension, etc) where as many patients with compensated cirrhosis live long lives unaffected by their histology (or even symptoms).

Varisces are a symptom related to cirrhosis, but are treatable in their own right and not an indication for transplant.

I hope that helps,

Robert.