Question: Hi Guys, so sorry for all the... - British Liver Trust

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Chaibooboo profile image
25 Replies

Hi Guys, so sorry for all the questions. I don't know if any of you can comment on this. Cirrhosis, I am right in saying this is end Stage Liver disease? How can I jump from nothing straight to Cirrhosis? Aren't there other stages that the liver goes through before you even get Cirrhosis? Or is my information all wrong??

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Chaibooboo profile image
Chaibooboo
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25 Replies
h0b0 profile image
h0b0

My partner was diagnosed with Cirrhosis June 2015. His only symptoms were swollen legs! By Feb 2016 he was really ill & luckily had a transplant July 2016. I guess everyone is different.

Miche49uk profile image
Miche49uk

Hiya Chaibooboo,

With regards to Cirrhosis, I believe (and again I will reiterate I am not a doctor nor health professional) but from my own experience here anyway a liver consultant will look at various Blood tests, Ultrasound and I would hope as happened to me this time a Fibroscan in order to determine whether you have Cirrhosis and from these tests whether indeed a liver biopsy is necessary which even the nurse that did my scan insisted was still the 'gold standard' in determining this because it takes a look at the liver on a cellular level whereas the Fibroscan that was used would give an actual reading of stiffness and the higher the reading then that determines which stage any damage, some of which is reversible is. The machine can also read fat levels but not the one our hospital has (yet- they're waiting for one) which I think is the CAP score.

Equally the reasons for the diagnosis will vary depending on the cause. I had a crisis, drank buckets of alcohol for a few weeks and turned yellow and was hospitalised with alcohol related Hepatitis whereby on recovering I was told if you don't drink it should recover... it seems that hopefully it is. My liver was fatty found by ultrasound in January and inflamed which is what Hepatitis is 'inflamed liver' but many things can cause Cirrhosis, the lady opposite me in her 80s had end stage Cirrhosis and kidney failure due to 30 odd years of not following a good diet after being diagnosed with diabetes.. others may have non alcoholic fatty liver disease and so on.

In simple terms you have; normal liver, fatty infiltrated liver, some early fibrosis, and so on scales from F1 to F4. Someone feel free to correct me if I'm wrong..

With regards to the term Cirrhosis then you have compensated Cirrhosis where you have damage or scaring but your liver is coping with it, and decompensated Cirrhosis where your liver really isn't doing so well...

So, don't panic, much can be done and really the consultant needs to determine cause and treatment. As I have said in a post somewhere or other I queried Cirrhosis appearing a good few years ago as if only had an ultrasound which isn't conclusive, I paid to see a consultant privately months later who blasted this out of the water, I then wrote to the hospital enclosing her report and it was removed.. I don't want to say that will happen to everyone but if in doubt shout...

In the meantime it's clearly worrying you a lot so I personally would either see your GP and seek a bit more clarity or contact the consultants secretary for the same reason...

This is the first time I had a fibroscan... historically I have gone months and years barely drinking at all in between I'm very sure if I had drunk at the levels I did all the time I wouldn't be typing this now..

Hope this helps a bit.. I'm not going to tell you not to worry as I think most would!

Michelle xx

AyrshireK profile image
AyrshireK

You are quite right that cirrhosis is termed end stage or stage four liver disease and it is a process of change :- Healthy Liver to Fatty Liver (Hepatic steatosis) to Liver Fibrosis to Cirrhosis. The earlier stages can give off little to no symptoms and it is not uncommon for it to go completely un-noticed until it reaches the later stages of damage. As we discussed previously my hubby never had any early signs until wham hospitalised due to late stage and in his case potentially life threatening symptoms.

If you do that upcoming course on Future Learn about looking after your liver you will discover that a great many of us in the Western World are walking about (and not knowing) with at least fatty liver due to our poor diet, generally sedentary lifestyle, too much salt, sugar and processed foods. A great many donor livers are rejected prior to transplant as they are already showing too much fatty change and so won't make a healthy transplant - the donor didn't know they had this in life.

That course is well worth doing for information on the liver and how to look after it - even with cirrhosis you can still make changes to benefit your liver going forward and also once they establish the cause (if indeed they confirm the diagnosis) you will be able to tackle it.

All the best, Katie x

Miche49uk profile image
Miche49uk in reply toAyrshireK

Great Post Katie I tend to waffle! X

in reply toMiche49uk

Hi

You both posted wonderful explanations, you made it so easy to understand. I haven't got cirrhosis yet but my liver is going worse from what liver nurse said, she's referred me for a fibroscan. Take care. Lots of love Lynne xxxx

Miche49uk profile image
Miche49uk in reply to

Oh lynne I'm sorry to hear that I hope that the fibroscan comes out well for you and you take care too xxx

in reply toMiche49uk

Thank you so much xxxx

Chaibooboo profile image
Chaibooboo in reply to

Good luck wit everything Lynne. Thinking of you xx

in reply toChaibooboo

Thank you so much. How are you feeling this morning? Xxxx

Chaibooboo profile image
Chaibooboo in reply to

Not too bad thanks :) Just trying to take it day by day and not overthink :) Hope you are good today xx

in reply toChaibooboo

Hi

Had a rough night but we have to keep smiling don't we?!? Xxxx

Chaibooboo profile image
Chaibooboo in reply to

:( In my thoughts <3 xx

in reply toChaibooboo

Thank you so much xxxx

Miche49uk profile image
Miche49uk in reply to

I forgot to ask what your nurse based that on?

in reply toMiche49uk

She got results of ultrasound xxxx

Miche49uk profile image
Miche49uk in reply to

Ah ok I have just gone and read your old posts about NASH, I hope the fibroscan results are ok and that you don't have to wait too long for one! Originally mine was meant to be July, then moved to November then suddenly a call a week ago and had it this week! Nurse said it's because they need to do so many she's in the entire week instead of a day so those waiting were brought forward, of course thanks to my ability to go straight to red alert I thought it was because something was wrong somewhere or other... sigh xxx8/

in reply toMiche49uk

Thank you so much for your kind words, much appreciated. Scan will hopefully be in October xxxx

Miche49uk profile image
Miche49uk in reply toAyrshireK

Where is the course found at Katie? X

AyrshireK profile image
AyrshireK in reply toMiche49uk

futurelearn.com/courses/liv...

A really good course as is the follow up one on Liver Transplantation which is due a re-run in November. You can do the course free - it mentions an upgrade costing £39 that just lets you sit the end of course tests and qualify for a certificate - this is a recent thing as the whole lot used to be free on Future Learn.

All the best,

Katie

Miche49uk profile image
Miche49uk in reply toAyrshireK

Thank you Katie I'll have a nose :)

Hi

Do you get results of fibroscan on the same day xxxx

Miche49uk profile image
Miche49uk in reply to

Hi Lynne sorry for delay I went to bed! Yes i did, by the nurse who did the test and I found it painless and they just seem to put the tool in different areas via your different ribs on the right and then send one pulse type feeling each time which I guess takes the reading, she gave me the KPa figure and IQR figure because I asked for it, (KPa and median I asked for but she said 0.4 IQR still no idea what that is and KPa was 5.3. This fibroscan didn't measure fat which I think is the CAP score but an ultrasound in July was normal whereas In Jan it was showing fatty infiltration and obviously I had inflammation.

It was faster than an ultrasound... the nurse did say that regardless of result it all goes back to the consultant who will look at cause and all other results and go from there but equally she told me I shouldn't be leaving concerned. I explained my cause (alcohol)...self inflicted nightmare.

Xxxx

in reply toMiche49uk

Thank you for such a detailed reply. Take care xxxx

Miche49uk profile image
Miche49uk in reply to

Most welcome Lynne (that's my middle name) :) xxx

in reply toMiche49uk

👍xxxx

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