It is five years since my husband was diagnosed with cirrhosis from AIH. Despite being given deadlines, he is still struggling on even though he has reached ESLD. Last few months he has had ongoing problems with reflux, he has been prescribed various meds to no avail. He coughs up bile, to the point now where it is really affecting his vocal chords and I am worried about HCC. Has anyone any thoughts please?
HCC?: It is five years since my husband... - British Liver Trust
It's very rare to have HCC liver cancer from AIH, its more common with viral hepatitis. His symptoms could be explained by the stage of his liver damage. I had HCC 8 years ago and has no symptoms at all, but many people with ESLD do have acid reflux, vomiting, digestive issues etc. If he has advanced liver disease he should have been monitored for HCC by 6 monthly scans and the AFP tumour marker blood test, which would normally pick up any signs of a tumour.
My hubbie has AIAD which led to cirrhosis and a subsequent transplant.
All through his appointments, for over a year, his AFP was normal.
On explant they found over 10 HCC tumours in the liver.
We were told that AFP marker does not always pick it up.
In fact it did us a favour as he would not have got the transplant with all those tumours , he was outside the criteria.
He is now nearly 7 year post transplant and still keeping our fingers crossed as no recurrence.
Hi freddie. I'm not familiar with the abbreviation AIAD. However you are correct that the AFP tumour marker isnt 100% accurate, my level was far far lower than the levels that alert people to the existance of a tumour. Was he having 6 monthly imaging due to having cirrhosis, and if so, did that not pick up any of the 10 tumours. Glad he got the gift of life, I was lucky to only have one small tumour which was resected, so no need for a transplant.
It is Alpha 1 Antitrypsin Deficiency, a genetic defect.
The fault was discovered in 1963 when he was 13 but not found in him until his late 50's.
Causes liver, lung and skin problems. Both parents have to carry 1 faulty gene of two. The baby then inherits one from each parent.. They both were carriers (1 faulty gene), he got both their faulty ones.
It has become much more known about recently.