Stage 4,now what?

[sandrakay]

Just found out I have PBC last month,now this!!!!

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I am puzzled.

I also read on here recently a contributor had mentioned they were at 'stage 4' but Idon't understand.

I have got confused with all this staging and personally I do not want to know. I'll go along with what the bloods are as opposed to anyone mentioning biopsies (due to the fact that the liver is extensive and a biopsy is taken from a small part that might be fine/notso fine and then perhaps give a notso accurate picture).

I filled out a survey last yr on Brit Liver Trust website and when I put I had PBC in it came up with what I could gather were 3 stages:- inflammation, fatty liver and then cirrhosis. I know when I was diagnosed it was said my liver was showing from the bloods to 'be a bit inflamed'.

Apparently this staging too, I believe I am right in saying that you tend to be given one stage further up after having a biopsy which I find a bit odd.

[sandrakay]

Its all confusing because i feel great and dont have alot of the symptoms it would take to be in the higher stages,no swelling, briusing,jaundice,etc.

[Gra79 in reply to sandrakay]

It can be confusing Hun, think you need to book app with ur consultant to discuss your results and future planning, your bloods are Hugh indicator and need to be balance with your biopsy results. A lot of consultants do not focus on staging very much even though they stage you if that makes sense!!!!!! Also it can be confusing as people do report feeling well when liver is struggling and feeling sick when liver is well - not logical I know :-((

I don't want to frighten you but Pbc is one of the most common reasons for liver transplantation, however a balance needs to be sought between needing one when you are at your optimum health to recover quicker as complications & suitability & time pressure increase with the sicker you are! It is very scary but you need to do your research and if you are at stage 4 with cirrhosis evident and liver is struggling you need to consider your options, you need a lot of support to consider your new diagnosis and prognosis.

Good luck

[Shellbear]

I'm not sure on the staging I've never been told.what stage I am although I am.under The transplant clinic now. That decision has been made due to my bloods not.my staging. I'd speak to your Dr if your concerned they should be able to put your mind at rest x

[gracesofia]

I get very confused by this pbc staging. My gastro consultant wants me to have a biopsy to see what stage I am at. I have a slight itch which is very sporadic and high lfts just been put on urso and have asked to see specialists at kings in london. My gp says people have different symptoms with the stsges. So I just think . . . . Do I really want to know! I have been on urso a week now and I must ssy I feel better not that I felt poorly before and thinking of taking milk thistle to. Off to a regional support group for my area on sundsy for the first time and hsve quite a few questions. Hope you all have a good weekend xx