"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Thursday, 18 November 2010

Reviewer role

The fact that I get so stiff and achey after simple tasks still niggles. I'm determined to get a layman's interpretation of the 'persistant florid activity' in my liver. Cousin GP (thanks coz) has come across it in terms of autoimmune hepatitis. Looking back over past blood tests results I find that although I am now supposedly negative for Hep B I tested positive for anti-smooth muscle autoantibody (ASMA) which is a standard test for autoimmune hepatitis. At least the results say to a 'titre of 1:800' and normal it seems is 1:20. This was probably not taken further as everyone was focussed on the cancer surgery.
Before going back to the GP with this query I email the British Liver Trust as they have been helpful before and have a helpline. In a jiffy the reply comes back that they are forwarding my query to one of their medical advisors who are all senior hepatologists. Brilliant. And in a further jiffy back comes the response: "The persistent florid activity refers to the inflammation in the liver. In this case there is clearly a lot of inflammation which means that the HBV is active or that there is another cause of liver inflammation." What a service, and now I can go back to the GP and get this checked out.
Their patient enquiry officer Sarah asks whether I would consider helping them as a Lay Reviewer for the new edition of their patient leaflet for Liver cancer? They have it checked by hepatologists to make sure it is clinically accurate. Then they ask a number of people who have experience of liver cancer to read through to check it is clear, useful and reflects their information needs.
I said yes - how cool is that!


  1. Hey, congratulations on becoming a Lay Reviewer! It's not every day you get invited to audit a liver cancer leaflet. I can't say as I've ever been asked to review anything other than my children's homework papers. Definitely cool.

    And you seem just the person to help them out. I can't believe how much medical knowledge you've acquired about your liver conditions. Wow. I mean, yes, I've learned quite a bit about rectal cancer for me, but I still can't spell half the terms involved. I do agree the information helps us be our own best advocates.

    Well done, Fiona.

  2. Thanks Steve. I've certainly become obsessive! For 30+ years I did nothing about positive hepatitis tests, mainly because the times the antibody levels were checked I was reassured it was inactive and I was ignorant of the implication of doing nothing. And where did it get me but to irreversible cirrhosis and cancer. Not good. From now on I will be the doctor's nightmare internet know-all patient (they probably have an acronym already, something like PAIN - patient and internet nightmare) but I would rather be that than dead, lol!