"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)

Friday, 7 January 2011

Warning: Lots of shouting in CAPITAL LETTERS

I'm now definately a nuisance.

At my December 7th clinic appointment (Blog post "Smiles 8, Frowns 2") I spoke to Dr C about the discovery of "persistant florid activity" in my liver. Dr C. felt that the longterm inactive Hep B was the cause of the inflammation. However he did agree to get another look at the biopsy to see if there was evidence of any 'active' hepatitis, such as autoimmune.

Having been promised a letter with the answer once everything was 'open' after Christmas I find after more chasing phone calls this week and a personal visit to the GP surgery today that though the letter was posted on Tuesday 4th it has yet to arrive either with me or at the GP. The GP 'may' get a faxed copy this afternoon, but I'm not allowed to know the content until a doctor has looked at it first. How likely is that on a hectic Friday afternoon and a surgery full of flu patients?

A significant question this letter (now mentally raised to mega importance) should answer is "Could Dr C tell me if the autoimmune blood test analysed 29/JULY/10 was a positive or negative result".

Reaching the end of my patience I decide to do for myself what the GP and/or Dr C could easily have done MONTHS ago (why oh why didn't I do it months ago myself). I ring the Immunology department at Manchester University who ran the test.
How fortunate I happen to have a personal copy of the blood test, conveniently with phone number at the top! Fully expecting to be told they won't discuss results with patients, only with doctors, I'm surprised to be put through to a technician.

I'll try to keep this simple.
This test is to look for evidence of autoimmune hepatitis.
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 10 drops of my blood in solution, dilutes it 30 times and can't see antibodies, it's a negative test. If he puts 10 drops of blood in the same solution and CAN see antibodies, it's a weak-positive test. If he dilutes it to 100times 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".

So I phone Dr C.s secretary for about the 4th time. I can hear her irritation, as she is on holiday next week and has 1001 things to do.
When I explain I've had this blood test result she says I need to talk to Dr C. asap. Hurrah again for Barbara, as despite my clearly irritating her I get a call from the hospital at 4.30 giving me an appointment next Tuesday 11th (back at my favourite little Congleton outpatients).

On the one hand I am relieved to have an answer to this blood test question that has been hanging over me for 6 months. While at the same time being p***ed off that I waited for someone else to do what I could have done myself 6 months ago. So now I am anxious that I have, for the same 6 months, been left without treatment for something described as 'PARTICULARLY STRONG' and I have to wait a bit more before anything is done about it.

Annoying, Moaning minnie post finished. Thank you for reading this far!


  1. You're welcome. Any time you need to vent I'm here to read it for you. Men might not be good listeners, be most of us can read.

    Nice sleuthing on the autoimmune test results. You should have your Private Investigator's license by the end of this adventure. Is there a known treatment for a 'PARTICULARLY STRONG' positive test result?

    This post reminds me of an old Peter Sellers movie called "The Mouse that Roared". I heard you clear across the pond, Fiona. :-) Now let's hope you have the doctor's attention.

    Cheers and hugs! xxxxx

  2. Well done Fiona for not giving up until you got the answer....it's crap that you've had to source this information yourself, but you have so moving on from there....

    What would you want the next steps to be now? I'm thinking you need to have a plan in place so that they're not allowed to drag their heels for another few months.

    Anyway, just wanted to say well done for taking the initiative and getting the info.

  3. Thanks for suggesting I put a plan in place. I hadn't thought of that. This is how brilliant the internet is, people to come up with ideas.

    I've got a sheet typed up that I prepared for my December clinic appointment that lists the tests I've already had which point to autoimmune. At that time I thought the second opinion on the biopsy was going to be the most important missing jigsaw piece. However it seems now that the autoimmune result is confirmation in itself, as it's so far out of normal range.

    I'll probably do a bit more research on the risk that taking steroids could potentially kick start the Hep B again. I'd want to be convinced that treatment for autoimmune (if we agree that's what it is) will halt rather than progress my cirrhosis. At the moment, worsening cirrhosis worries me more than a recurrence of the cancer, as any more scarring will exclude the option of surgery to completely remove new tumours.

    I've no doubt I will be awake on and off in the wee small hours, mulling over options in my head. Thank goodness it's the weekend and I can have a lie in.

    I hope you feel you are making progress too. I'm looking forward to a post by you that says you have been luxuriating in a deep bath. Someone needs to invent a buttock bag, like those bags people put their leg or arm plaster casts in!

  4. LOLOL @ buttock bathing ...so funny :-)

    I think you have to tackle the most pressing things first Fiona...You said the cirrhosis worries you more, therefore that has to take priority in your plan - any concerns over a possible recurrence go to one side until you sort out the thing that worries you more...

    It will all fall into place once you do a bit more research.

  5. Fiona - Sorry about the death of your favorite client. That has to be the tougher part of your job assisting the elderly. I hope the funeral was a fitting tribute to a life well lived. You do difficult things that make a difference.