Liver Biopsy : My husband has had... - British Liver Trust

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Liver Biopsy

Beegeefan profile image
16 Replies

My husband has had 4 liver biopsies and got the results this morning.

They said he was 5 on the scarring and stiffness level.

What does this mean.

He refuses to let me go with him and ask questions. He never questions anything.

I would greatly appreciate any information

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Beegeefan profile image
Beegeefan
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16 Replies

How frustrating for you. You want to ask these sorts of questions as and when you are given the results don't you? Then you can ask further questions like so what happens or what do we do next? Why didn't ask? Is he scared or disinterested?

Laura x

Beegeefan profile image
Beegeefan in reply to

He "just gets on with it" and tries not to worry me.

AyrshireK profile image
AyrshireK

That's a great shame that he won't let you go with him as two sets of ears are better than one and if there is progression of his illness / deterioration in health you need to know what to look out for and what degree of support he'll require.

My hubby and I get called 'team' at hospital because that's exactly what we are. Hubby is the one with liver disease and if he were left alone to go to appointments he wouldn't comprehend any of the med-speak or even get there. I have been with him every step of the way and it has been very much needed. If it were to come to requirement of transplant then your hubbies support and care network would be examined as a person can't go through this alone.

What is the cause of hubbies liver condition? My hubby has cirrhosis due to auto-immune liver disease.

Katie

Beegeefan profile image
Beegeefan in reply to AyrshireK

Haemochromatosis undiagnosed for over 20 years.

in reply to AyrshireK

Did your husband have autoimmune hepatitis? Was wondering how long did it take for him to get cirrhosis? I am stage 2 fibrosis and I worry about this all the time. Prayers for your husband 💕

Beegeefan profile image
Beegeefan in reply to

The undiagnosed haemochromatosis went on for over 20 years until we moved from a tiny Scottish Island to the mainland. Through that, he has had 2 hips replaced and is in terrible pain from that as it is all over his body as well as the abdominal pain.

AyrshireK profile image
AyrshireK

As regards the stiffness/scarring score being a 5 this is more than likely using the Ishak Scoring System for Fibrosis.

There are two systems (there are more actually but these are the main ones) for scoring fibrosis of the liver one is Metavir which scores the liver as thus:-

F0 Normal - No Fibrosis

F1 Mild Fibrosis - portal fibrosis without septa

F2 Moderate Fibrosis - portal fibrosis with a few septa

F3 Severe Fibrosis - numerous septa without cirrhosis

F4 Cirrhosis

The Ishak Scoring System goes up to 6 where it relates to Metavir Scale as so:-

Ishak 0 = Metavir F0

Ishak 1 = Metavir F1

Ishak 2 & 3 = Metavir F2

Ishak 4 & 5 = Metavir F3

Ishak 6 = Metavir F4 (Cirrhosis)

If hubby is Ishak 5 then he is at the upper end of F3 Severe Fibrosis but possibly not yet cirrhosis. It might yet be possible to reverse some of this damage if the underlying cause is identified and treated.

Katie

Beegeefan profile image
Beegeefan in reply to AyrshireK

Thanks for the information Ayrshire. My husband is from a small Scottish Island (near Ayrshire) and was brought up not to question anyone professional. I know this is stupid but that's the way he is.

He had haemochromatosis for many years before it was diagnosed. This caused severe arthritis and organ damage.

I read as much as possible about the condition but wish I could speak to his doctor so that I can help him.

Just a stubborn Scotsman who does not want to worry me but doesn't realise I worry more. It may be because I am disabled that he doesn't want me to know.

AyrshireK profile image
AyrshireK in reply to Beegeefan

During the course of hubbies illness we've learned that you have to take charge of your own care. Learn about your condition so you can ask appropriate and pertinent questions and make the most out of the consultations you have. We've learned that sometimes you do have to push professionals for information and even from time to time had to chase up appointments and tests which haven't been ordered or done in time.

I know you've said you have read up on the condition - in case you've not seen it tThere is also information on the British Liver Trust site about the condition and it is better to be informed so as to know what to look out for in the way of deterioration etc. britishlivertrust.org.uk/li...

Has his condition been being treated? Perhaps you need to be forceful and explain that you are getting more concerned by being in the dark when all you want to do is be there to support him. The more you know the better you can help.

My hubby largely doesn't dwell on his condition, he gets on with living life, medics contact me and deal through me for appointments etc. We go to appointments together (he can no longer drive due to his health anyway), we make notes before hand like what recent symptoms have there been, any medication currently being taken and any questions we want to ask and we jot down answers at appointments and therefore get the most out of them (as they are becoming ever more infrequent sadly!).

Wishing you both the best of luck,

Katie in a rather dreich & soggy South Ayrshire this afternoon. :)

Danubian profile image
Danubian

dreich - must be Scottish :-)*

AyrshireK profile image
AyrshireK in reply to Danubian

Indeed it Scots and means 'dreary or bleak' and its rather wet here this afternoon.

The word's origin though is Germanic - Middle English (in the sense ‘patient, long-suffering’): of Germanic origin, corresponding to Old Norse drjúgr ‘enduring, lasting’.

Every day is a school day. :)

Katie

Beegeefan profile image
Beegeefan in reply to AyrshireK

Having a Scottish husband, I have learned so many new words over the many years we have been married (I still can't understand him). We now live in my home town (I'm a geordie), he is the one who has trouble with the accent.

Bootandall profile image
Bootandall

Hi, I don't know anything about it but wanted to wish you the best of luck. My American husband (we live in North Carolina U.S.A.) is of Scottish heritage. He is very easy-going until it comes to doing something he doesn't want to do, then he is as stubborn as the day is long, I understand the problem all too well.

Beegeefan profile image
Beegeefan in reply to Bootandall

It must be a Scottish trait. Stubborn is the exact word. My husband is so easy going until the stubbornness kicks in.

Thank you so much for your reply.

LorraineLouise profile image
LorraineLouise

I’m just curious. Why so many biopsies? It usually takes just one to get a diagnosis.

Beegeefan profile image
Beegeefan in reply to LorraineLouise

They were unable to extract samples from the liver. Over 20 years of undiagnosed haemochromatosis caused so many problems.

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