"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, 13 January 2011

War is over ... and what have we done

This is a long post, most of it a personal aide-memoire so that I have in writing a summary of my January clinic appointment. I suffer from what hepatitis patients call 'brain fog' when your brain is cosily cuddled by clouds of cotton wool. It feels lovely, but means I have no recall of things that happened yesterday!

Apologies in advance for those whose brains will be hurting by the end of this post.

At my December appointment Dr C’s diagnosis was chronic inactive hepatitis B.
What the pathology report described as ‘florid activity’ he diagnosed as inflammation not unexpected in tissue taken from near a tumour.
Since then he has obtained his own copy of the autoimmune blood test from the Manchester laboratory.
Because of this, and my request that he consider autoimmune, he has asked the hepatobiliary pathologist who took the liver biopsy to look at the tissue again.

He explained to me what he believes is the progression of my hep B.
After infection there is an ‘acute’ phase lasting a few weeks. For some, it's so mild there are no symptoms or perhaps at most vague flu symptoms. So difficult to pinpoint when I was infected as it wasn’t dramatic, nor was I jaundiced.
From the acute infection phase hep B progresses through a clearance phase in which the immune system attempts to eliminate the virus, and on to a phase in which the virus is inactive.

In its attempt to eliminate the virus the immune system goes to war on the hepatitis B virus-infected liver cells. This phase is called the immune clearance phase. The duration and intensity of this attack determine whether you develop cirrhosis.

If the attack is swift and accurate, as in a sniper or expert rifleman, the only damage is slight inflammation.

If the attack is less accurate, say by a cavalry charge where the aim is wayward and the horses hooves batter the liver a bit, the damage is scar tissue (fibrosis).

In my case, the liver was under attack from Dad’s Army, who with dodgy arthritic knees and a few garden implements to beat the liver about a bit, took a long time and caused a lot of collateral damage killing off the virus within the liver, causing cirrhosis.

I was infected by the mid-70’s and inactive by 1993, giving Dads Army 20 years to finish off the virus - plenty of time for tea breaks and Pike’s mum to knit new scarves.

After the virus is cleared the infection enters a dormant phase. Levels of virus become very low, the standard liver blood tests are near normal and few inflamed liver cells are seen on the liver.
This is the phase I’m in BUT the pathology reports inflamed liver cells. Dr C’s double-check is to see if they are viral cells, or cells inflamed by being next to a tumour.

His reluctance to start treating for autoimmune, based on the SMA blood test and the statement ‘florid activity’ is because of the risk. Steroids, the standard treatment for autoimmune, suppress the immune system. That same immune system that used everything in its arsenal to clear the hep B. Suppress the attack and up pops the hep B virus again.

Other things as well as autoimmune can raise the SMA. Cirrhosis is one. I have established cirrhosis.
However, I did ask if he would expect cirrhosis to elevate the level to 800. This high level, plus my symptoms of muscle ache, joint swelling and feeling tired and feverish mean he will investigate autoimmune conditions, not just autoimmune hepatitis.

The length of time it’s taking for the pathologist to get back to him is partly because I’m not an urgent cancer patient.

I’m currently a cirrhosis Child-Pugh A which means I’m still eligible for surgery should it be needed. I want to do all I can to stop the cirrhosis getting worse, tipping me over to B. He said realistically there is not much I can do. I’m already at end-stage, though ‘compensated’ end stage which means my liver is compensating for the damage.

So family, followers and friends. There is no magic pill to make me better, or even to make me ‘feel’ better. What we do now is monitor and aim to prevent complications.

Within the cancer community there are lots of metaphors for waging war – we ‘fight’ cancer; it’s a personal ‘battle’; we talk of ‘conquering’ cancer. The times of surgery and chemo are these times, when we and our medical teams are actively doing something to ‘kill’ this cancer. For a while we are the centre of attention and our lives are busy with trips to appointments, filling in dates in our diaries, knowing the medics are up to date with what’s going on with our insides.
The living in limbo afterwards is mentally harder. There is no action, our security blanket of
treatment has gone, we have time to reflect, we have no idea what’s going on inside our bodies, we’ve put down our cancer fighting tools.

And while tomorrow is unsure, we need to make ourselves keep living ...we need to keep moving forward.
Up to now I may have seemed positive, but I think that’s because I had clear challenges and targets.
Now there is ‘nothing to do’, so lots of encouragement to stay active and lots of emotional support to keep going with a positive frame of mind will be gratefully received.

Diary dates
February 1st, Macclesfield: (i) Liver function blood tests to check my albumin and bilirubin are still within Child Pugh A (ii) Full blood count, including a platelet count which helps to predict portal hypertension

February 9th, GP surgery, 10am: AFP tumour marker to check for recurrence of cancer

February 22nd, Macclesfield, 3pm: Pre biopsy blood tests, including clotting and platelet count.

February 25th, Macclesfield, 9.30am: Liver biopsy. Nothing to eat or drink 2 hours before. Bring dressing gown and slippers.

March 3rd, Macclesfield, 1:00pm: (i) CT abdomen scan with contrast. To check for tumours. To check for fluid in the abdomen (ascites). To check blood flow (portal hypertension)
No food for 3 hours before, iodine drink prior to examination, IV iodine for examination. Bring a dressing gown

March 8th, Macclesfield, 5:20pm: Gastroscopy. To check for any varices.

April 5th, Congleton 10:00am: Clinic appt with Dr C to review the above

May, GP surgery (not yet booked): Repeat of February blood tests

May 5th, North Manchester GH, 3:10pm: Clinic appt with O’Blimey to review the above.
Sometime before this (not yet booked). Endoscopy to check for esophegal and gastric varices.

August: Repeat of blood tests

September: Repeat of CT scan

Etc, etc.

If tumour marker rises, add in CT scan of thorax to check for spread to the lungs.
If liver function tests become abnormal, add in Hep B DNA test to check for hep B flare-up


  1. I love Dad's Army but in your case Fiona I think you would have been better served by the SAS!

    When you are talking about Autoimmune is Lupus being considered? I ask this because all the symptoms you list are associated with Lupus and 'Lupus type' illnesses.
    I was diagnosed with Lupus in 2005 - my treatment consisted of anti-malaria meds and managed to avoid the steroids.

    I'm currently reading a book which talks about all you mention above, the desire to 'fight' cancer, 'win the battle' but mentions that what we *should* be doing is accepting and living with our cancer and helping the immune system to deal with rogue cells.
    It's about a young lady of 27 who developed aggressive Breast cancer and decided not to do the conventional approach. Doc's said she wouldn't survive - this was in 2002 and she's now free of cancer.

    You say there's nothing to do now Fiona, and I do understand that, but there IS still work to do.
    Healthy immune system and following the plan to get yourself (and myself, in my case) back to 'fighting fit' is as tough as any of the treatment you had beforehand.
    You've not been abandoned Fiona, just left to move on and start your own fight back plan.

    I like plans - write one out.They give you a purpose and a goal.

  2. I'm pleased with myself for finding that Dad's Army pic. I laugh when I scroll down the page and see it. I nearly put an SAS sniper pic on first, but he looked too scary and weird covered in camouflage grass!
    When I went to the GP back in May I thought I had Lupus, the symptoms seemed to fit an autoimmune. There I go self-diagnosing again! She ran a lot of tests (cant remember them all, would have to check back). The good thing about this post is it will remind me about the autoimmune investigation so that I keep checking on progress. By coincidence a blogger who also posts on a hepatitis forum is going through the same. A positive autoimmune result he's been told has been skewed by his Hep C.
    Like you I'm trying to work on staying healthy. I take Milk Thistle, and acidophilus and Vitamins including D and K (think I should increase the D level). T makes sure I get regular exercise. I've arranged a return to work interview for next week, I'll post on here how that goes.
    I've been aware these last few days I've felt a bit adrift and need to refocus on different goals.