"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)

Tuesday 10 May 2011

Is there anything to treat?

Saw my hepatologist yesterday.

He'd had time to mull over his original treatment plan for his diagnosis of ‘probable’ autoimmune hepatitis alongside the chronic inactive Hep B. He'd also had time to do what I did which is research existing/previous cases. And like me, only came up with 2 documented. So it's rare to have co-infection of Hep B and Autoimmune.

He spoke to his ex-boss and his mentor, both at the Freeman Liver Unit in Newcastle and between them they came up with 2 options:
1) no treatment but monitor more closely than I am being at the mo;
2) treat with a combination of drugs for the low level inflammation and some more drugs to protect againt the risk of the Hep B reactivating.

They've gone over both the 1st and 2nd biopsy, and all the blood tests, and tissue slides and it's still not possible to say anything more definite than there is some 'autoimmune' activity but not very much and difficult to quantify if it is stable or increasing.

Tom asked if either treatment plan would give any protection against the cancer recurring, and I asked if either would give a better life expectancy.
Heppy doc said neither would improve the statistics of a de-novo (new) tumour, and it wasn’t possible to say re the life expectancy.

So I opted for the choice that gives me the better current quality of life, which is option (1) as there will be side effects using immunosuppressants etc long term.

The good news for me is that heppy doc says my cirrhosis is very early stage and that my liver is performing well. O'Blimey the surgeon (who is the only one to have seen the state of my liver first-hand) had been somewhat gloomy and I'd assumed I was worse than it seems I am.

Heppy doc thinks that although I’m chronic inactive hep B I probably have a history of periodic reactivation that went unnoticed due to lack of monitoring. He plans to monitor my bloods monthly and have me back in clinic in 3 months. The idea is to build up a picture of everything that tracks the inflammation and spot immediately any deviation from my current 'normal'. The way things are at the moment my cirrhosis should remain fairly stable, but a flare would accelerate it.

As always when faced with a new path to follow I spend a lot of time mulling it over, consequently I'm a bit tired today. Also I had a long work shift this morning and am out at a book club meeting tonight. So I'm off to pull the duvet over my head for a few hours.
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4 comments:

  1. Steve Chamberlin10 May 2011 at 17:57

    Enjoy your nap, Fiona. Definitely good news on the very early stage cirrhosis. I'm so glad that heppy doc took the time to really look closer at what is happening and even to counsel with his mentor. I like your choice for a better quality of life now. Whatever comes in the future you'll have been watching and preparing for it. Have fun at the book club meeting tonight. A friend loaned me an audio copy of the Harry Potter books. I never did read them, nor have I seen the movies, so listening to them in the car going to and from work has been fun. After I finish each book I borrow the movie. I'm currently in the middle of year 4, the Goblet of Fire. A nice diversion. Happy reading! ((o))

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  2. Carole10 May 2011 at 20:58

    Hi Fiona,

    I feel that Hep Doc knows his stuff and you feel confident with him? This is good :-)

    Option 1 seems definitely the best choice to me, Option 2 is still available but only if necessary - sounds perfect.
    Keep keeping well xx

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  3. Fiona11 May 2011 at 07:46

    Hi Steve and Carole

    On reflection, Option 1 is back where I was pre-cancer! Doing nothing.

    On the other hand, I'm being closely scrutinised doing nothing.

    And yes I do feel more confident in Hep Doc. Whilst Dr S also prescribed 'doing nothing' his treatment plan was more hands off, can't do anything to stop the progression of the cirrhosis, will step in to deal with life threatening complications as they arise.

    Heppy Docs 'doing nothing' is more hands on; lets step in the moment we see any suggestion that the cirrhosis is progressing, wants to keep it right where it is for as long as possible.

    - if that makes sense??

    Hugs to both. Nearly there Steve.

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  4. Carole11 May 2011 at 08:40

    'Doing nothing' is where I'm at with my post op plan Fiona - the only difference is in the monitoring, which in my case feels a bit non existant at the moment :-(

    Hope work is going well and you're still remembering to take things easier than before.

    Hugs back xxxx

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