"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)

Wednesday, 6 February 2013

Back home

Liver biopsy done Tuesday 5th afternoon.  Wow that was painful this time.  Poor nursey had me squeezing her hand real tight.  I thought it might be bad so asked for a shot of Diapezam before, to relax me.  But it still hurt, even after 2 jabs of Lidocaine anaesthetic. 
They went in through the ribs. 
Nice radiographer.  While chatting, he told me it seems the liver cancer team I'm under at the moment will be re-locating to another hospital in the next few months.  It will be closer to where T works, and accessible to me by train, so that sounds better for the long haul.
Bed rest for the rest of the day, and well enough to be discharged today, Wednesday 6th.

More blood results are back, strengthening the autoimmune diagnosis. 
A test of my immunoglobins shows the iGg raised, as it was in April 2011 when Dr Al first suspected autoimmune alongside the Hep B.  Immunoglobulins are part of your immune system, so this means mine is on the defensive again.
The next test is more significant.  Back at the end of 2010/2011 I was getting very angry waiting for someone to explain a baffling result for a test called 'Smooth Muscle Antibody' or SMA which is used in the diagnosis of autoimmune conditions.  The way they test is the blood is like this (quote from 2011 blog entry):

For this test the technician repeatedly dilutes my blood sample until the dilution is so weak he can no longer see antibodies. Imagine putting 10 drops of Ribena in 10ml of water. Held up to the light it looks Ribena colour. Now top the water up to 20ml. The Ribena colour gets weaker but is still blackberry colour. Now top it up to 40ml. It's gone wishywashy pale. Dilute it again to 80ml (that's about 1/8 of a pint). It looks clear now, no sign of Ribena at all.
If the technician puts drops of my blood in solution, dilutes it 30 times and can't see antibodies, it's a negative test. If he puts drops of blood in the same solution and CAN see antibodies, it's a weak-positive test. If he dilutes it  x100 times and can still see antibodies, it's definitely positive.
He carried on with my blood sample, continually seeing positive antibodies until he had reached the maximum dilution they can possibly test to in that laboratory. He diluted my sample 800 times and could STILL see antibodies.
"So it's positive" I ask. "Yes", he said, "PARTICULARLY STRONGLY POSITIVE".

Dr Al has run this test again.  Its 1:640, which means they diluted it to a ratio of one drop of blood to 640 of solution and can still see the result.  Very very positive again.  'Normal', or a negative result is a dilution of 1:20 ratio.

I go back to clinic next Tuesday 12th, to hopefully get results of biopsy and work on THE PLAN of what to do next.


  1. Ouch Fiona,
    It hurts just reading this. Do they have any good solutions or alternatives for this problem? I hope that the biopsy results have better results for you. Thanks for keeping us updated.
    Keeping my fingers crossed for you on the 12th.

  2. Hi Carla. In medical diagnosis I think the biopsy of tissue is still recognised as the most accurate way of diagnosing a tissue disease, as opposed to blood tests.

    For a diagnosis of autoimmune hepatitis (because its not a virus like hep C or B there are no antibodies to pick up in blood tests), ideally the patient ticks a chart of symptoms and blood test results. If they score >7 its definitely autoimmune, if they score <6 its a probable diagnosis. Its as vague as that. I'm a probable, and 2 years ago when a few of the boxes started to be ticked, I was an even lower probable than now, more a 'maybe', so the doc didnt want to start any treatment that couldnt be reversed or might compromise the Hep B. Hence we played watch and wait for so long.