For everyone who has stage 4 pbc

[Mysa1981]

Could you please tell me How long do you have stage 4 cirrhosis ?❤️

[cazer]

Well that's sort of how long is a piece of string!!!! i was diagnosed stage 4 19yrs ago ive just had a transplant.

the biopsy can give stages but its not clear cut because that bit of liver can be stage4 and another area could be stage 1.

your blood tests are a more accurate indicator of how your liver is doing.

best wishes cazer

[Jackie71]

Possibly about six years now but bloods are good and I see consultant twice a year for scans and chat. Work full time, would say that I do get tired but otherwise pretty good.

[bobbycat]

I think it can be different with everyone and how the liver progresses when you are taking tablets and eating well. I was told 10 years but it wasn't set in stone ...all the best

[allotment]

Hello Mysa1981,

Strange these stages of PBC,

I was diagnosed in 2001 and gradually my health got worse until I had a transplant in 2013. At no time did any Consultant or Doctor mentioned any stage I was on. I ought to be able to tell you how long I was stage 4 but it was an issue that did not bother me.

The last year before transplant was not good for me. I was permanently tired with little or no energy. This an issue because I was told to keep myself as fit as possible because of the operation. Also, the disease affected my brain in this last year and months before the op. I even suffered with hallucinations. So for me I must of been at stage 4 during the last year.

I'm not sure how certain stages can be attributed to anyone with PBC because it affects us all in different ways.

Not much help with answering your question Mysa1981 but I can say I'm doing well and doing the things I did prior to transplant. I'm 71. Good luck

Allotment

[Shulsey]

Everyone is so different with the progression. I was diagnose at stage 2 in 2012. But I had a quick progression from stage 2/3 into stage 4 with cirrhosis & small varicies. I've been at stage 4 for about one & 1/2 years. My heptologist says that as long as my numbers keep going down (recently started the new med Ocaliva plus the Urso) I shouldn't even need placed on a transplant list for another 5-10 years. I wish I could just get the transplant over with but there are others ahead of of me who need a new liver worse than I.

[Hidden in reply to Shulsey]

But you still have to suffer. To me this is unfair. It should be up to us if we want or need a transplant because of quality of life. I don't like my friends hurting. It's unfair

[Shulsey in reply to Hidden]

I understand that side off it also. But, people have to die in order for us to get that new liver, so there isn't actually a shelf with new livers on them. There are only a limited supply at certain times & there are people much worse off than I. My time will come for my new liver, it's truly up to the man upstairs as to when my time is. I don't like the fact that anyone, including myself, has to suffer. It is what it is & all I can do is pray my time comes sooner than later. ❤️

[Hidden in reply to Shulsey]

Laws have to be changed for transplant. When someone is on life support and unplugged or no chance at survival than their organs need to be removed instead of being allowed to shut down and not good for transplant. Than there's people that live in low crime areas where organs are not as available. I researched this. I was at one time totally against organ transplant because I didn't like people. Well I learned that people like us are very good people because we have values and see life differently. People like us would never intentionally do evil.

[Shulsey in reply to Hidden]

I tell myself & others that the Lord gives his strongest soilders the hardest trials. He must think we're all super hero's😇😉

[Hidden in reply to Shulsey]

God is taking me away from my family because they are bullies

[Hidden]

I don't think any of us can say exactly when we moved into Stage 4 (cirrhosis) which means we can't really give a 'time' frame.

I was diagnosed 28+ years ago and began noticing changes in my symptoms about 7 years ago. After discussing them with my 'then' specialist, and him dismissing my concerns due to my LFTs being near normal and stable, I decided a 'new' specialist was in order. He ordered an ultrasound, which showed extensive cirrhosis, and a subsequent fibroscan gave a result of 30 - as cirrhosis doesn't just appear overnight I must have moved into Stage 4 quite a few years before I started noticing the new symptoms.

Oh, and by the way, my LFTs are now the best they have been since diagnosis - it's the bilirubin and the albumin that concerns my specialist, and at the moment they are both just within the 'normal' range.

[Jo_Br]

I will possibly never know what stage I am at as biopsy was ruled out and not needed, in the UK its not done routinely anymore and for good reason. I have PBC, with a positive for GP 210 nobody mentions this up to now, if they have even been told. It's a more aggressive PBC affecting 5% of people with PBC so stage may be 1or 4, as somebody said different parts of the liver will give a different stage, depending on where in the biopsy is performed, if this is wrong please correct me. So if it was done on another part of the liver it may have staged at 1??

I tend to agree with Hidden we get a short time with a consultant to tell them our woes and it's not enough time to decide how bad a person is importantly, emotionally because of symptoms or indeed external issues. Some are transplanted just because of life quality rather than the liver state. eg for the itch, all patients should be considered because of physical and emotional symptoms as well as liver stage. It's done for gastric bands, boob jobs all sorts of cosmetic procedures that physically do not save a life but the person's mental health is taken into consideration and their life is transformed.

I am not saying for myself, but I have read here and many places that PBC is so unique to each person and one size does not fit all patients.

Sadly not enough livers out there, I hope we get to the opt out of organ donation faster as this is the way foward. 22 people die each day in the UK needing a transplant and how many die that same day who possibly would have given their organs gladly but never filled in a card etc.

[Mysa1981]

Thank you to everyone who answered my question☺️

best wishes to you all💕💕

[Julez1961]

I went from stage 1 PBC to stage 4 PBC in probably less than 3 weeks as l turned bright yellow and put on 26 kilograms of fluid. My liver failed and l was in life support while they tried to get me a liver. Just before they did my liver picked up a little and a man who was also in ICU waiting got worse so her got it. That is 7 years ago but as its prioritized it goes to the ones that will not survive without a transplanted liver. I hope this helps, my life is a struggle every day with other parts of my body breaking down because of the pressure put on them. I am suffering from malnutrition now as well.

But hey I'm alive so it could be worse.