"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, 29 February 2012


More letters from heppy doc today. Now that he has a longer medical history for me, he has been able to consider everything he knows about my hepatitis carefully. The last two clinics I had with him he took a blood test to detect my hepatitis B viral load (thats a measure of how much of the virus is detectable in my blood). Both have come back detectable, albeit very low. This contrasts with one I had done in 2010 which came back Undetectable. Prior to that nobody had ever taken a viral load test as far as I'm aware.

So he wants to discuss starting me on treatment, probably Tenofovir those lovely blue pills in the picture above, if I am agreeable. So I go to see him on March 26th (our wedding anniversary, that'll be easy to remember if I do start treatment!).

Having had this for 30+ years and never been on any medication for it, at the moment this feels like a major step. Backwards or forwards I havent yet decided.

Friday, 10 February 2012

Hepatitis support meeting - March

On March 8th the British Liver Trust is holding a one-day meeting at an hotel near Macclesfield.

There will be a presentation by a North West hepatologist about new treatments for hepatitis, and a presentation by a Specialist hepatitis nurse from a North West treatment centre. Both presentations will be followed by an opportunity to ask questions.
After that there will be 'workshops' for the delegates to find out about where to go for support and how to make themselves feel better.
During the 'Where do I go for support' session I'm giving delegates the opportunity to log on to the online support forum I use (and help administrate).

If anyone with hepatitis in the North of England reads this, I'll post the details here in case you are interested in coming along. It's a chance to meet others face-to-face, have a chat, lunch and tea, and ask questions to the professionals.

The date is March 8th, and it's at the Shrigley Hall Hotel, Macclesfield, Cheshire from 11am to 4.45pm. Contact Charlotte Bowen, Regional Support Group Co-ordinator , Tel: 01425 481320 or Mobile: 07738982558 if you would like to go.

See you there!

Saturday, 4 February 2012


T is making home-made marmalade. Nothing odd about that. Except it's -4 degrees outside and with the kitchen window open a blizzard is blowing in instead of the steam blowing out.

Lovely smell of oranges and lemons though.

Remember those old support stocking you got post op. from the hospital? Dont throw them away. With a knot in one end they make a handy bag for the fruit pips so that pectin can be added to the mix! Very attractive indeed.

Wednesday, 1 February 2012

January clinic results

Emailed heppy doc's secretary on Monday 30th, to remind her I had been waiting 2 weeks for test results that should have been available within days.
Got an out of office reply which said she would be back 31st Jan.
Got an envelope in the post today (1st Feb) postmarked 8.23am 31st Jan with paper copies of the test results.
Yay! She got into work early then!

Immunoglobulins ok. IgG still a little high but continuing to come down. This is the one that fits with my autoimmune diagnosis.
Anti-nuclear antibody - 1:100 weak positive. This also fits with my autoimmune diagnosis
Smooth muscle antibody - 1:40. 1:20 is normal, but this level of 1:40 is nothing to panic about, just fits with the autoimmune again
Mitrochrondrial antibody - 1:40 (1:160 would be a problem, but 1:40 is ok)
ESR - this was to see if I was having a polymyalgia rheumatica flare. Came back within normal range, so that's good
HBV DNA viral load - detected @ 123 iu/ml. It means I have 123 of the little critters in a particular measure per mil of blood. Treatment wouldn't be indicated until a level of 2,000, so we plod along watching this low detection level at a safe distance.
Full Blood Count all win normal range.
No Liver Function results and no tumour marker AFP. I'm fairly sure heppy doc said he was taking an AFP, but its been steady at 1 for a while now, so not bothered about that. I should get it done again in April.
No letter as yet to my GP about all this, but no doubt that will plop through the letterbox all in good time. If not, back to the email reminders again!
So that's me done and dusted.