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
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
He "just gets on with it" and tries not to worry me.
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
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 💕
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.
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
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.
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. 
dreich - must be Scottish :-)*
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
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.
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.
I’m just curious. Why so many biopsies? It usually takes just one to get a diagnosis.
They were unable to extract samples from the liver. Over 20 years of undiagnosed haemochromatosis caused so many problems.
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