"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, 27 June 2012

Am I serious?

To my earlier post on the source of the infection, anonymous asks "Are you serious?".  

Well yes.  Apart from having no idea how you check a mosquito to see if it is Hep B positive!  But if we can identify malaria in mosquitoes, I guess we have the technology.
Do a general 'google' search and you will find lots of articles with valid reasons why its not possible to spread via mosquitoes - to do with saliva not being a transmission route, the likely survival time of the virus in the mosquito, etc. 
But if Hepatitis B viral DNA can be detected in bed bugs up to six weeks after they feed on infectious blood, it makes you wonder, doesnt it?
Here's some research that was published in 1973 on HBV in mosquitoes:
Mosquitoes were fed on or inoculated with blood or serum positive for hepatitis-B antigen (HBAg) or allowed to feed on the arm of an HBAg carrier. Pools of mosquitoes were tested by radioimmunoassay at intervals up to 45 days after exposure to HBAg. HBAg was detected long after the blood itself would have been digested. The findings suggest persistence (but not necessarily replication) of HBAg in mosquitoes.
The Lancet, Volume 302, Issue 7832, Pages 758 - 760, 6 October 1973

I've had 30 years to go over and over the different possibilites for how I was infected.
Here are the most common transmission routes:
Mother to baby:  Possible, but unlikely.  If my mother had Hep B (she too spent time in Kenya, but in the 1950s) I will never know, as she died in 1981.  If I had been infected by maternal transmission, then my brother most likely would have.  And he hasnt (as far as I know, sorry bro!)
Intravenous drug use:  I'm always asked about this.  Its a 'no'.
Unprotected sex with a Hep B+ partner: Again, no
Sharing razor/toothbrush with a Hep B+ partner.  No
Blood transfusion before screening was introduced in the UK:  No
Dental work in a country where equipment isnt sterilised:  No (unless my white middle class dentist in the UK in the 60's is a possible)
Tattoo: No
Piercings: Possible, if a white middle class hairdressing salon in the UK with piercing gun was high risk.

Where have I been where Hep B is much more prevalent than white middle class England.  
How many of the Kenyan population there are infected with Hep B: Hundreds of thousands.
And with my genotype?: 88%
Are travellers recommended to get the Hep B vaccination before travelling there: Yes.
Why? Are they all going to share needles with Kenyan drug users and have unprotected sex? I think not, so there must be other transmission routes that put travellers at risk.
Did I have a Hep B vaccination before travelling?:  No, it wasnt available in the early 1970s.
How many of the population there are bitten by mosquitoes:  Hundreds of thousands.
When a mosquito bites a human, it injects saliva and anti-coagulants. Could these carry Hep B?  Seems possible to me.

Anonymous said "I had no idea that mosquitos could spread hepatitis so easily".  Whoa, steady on.  If you 'google' the question, the answer will come back either its not possible or its not documented in medical literature that Hep B is transmitted that way.  But how many other viruses and infections apart from malaria do mosquitoes transmit?: Yellow fever, dengue fever, encephalitis, polyarthritis, Rift Valley fever, Ross River fever, West Nile virus.  So why not viral hepatitis, seems possible to me.  Hep B is highly infectious, 100x more infectious than HIV.  Doesnt take a lot of blood to transmit it.

Anonymous said "That is an extremely scary thought... since it is next to impossible to entirely avoid exposure to mosquitos"  But you can protect yourself 100% by choosing to have the Hep B vaccination.  Have it done now and you banish scary thoughts!

"I hope they automatically screen for hepatitis whenever they draw blood"  In the UK, the Blood Transfusion service have screened blood donors for many years now, for hepatitis, HIV etc.  That's how I was diagnosed - it was picked up when my donor blood was screened.
What they dont do is screen your blood when the doctor does a blood draw for a health reason.  Say, for example, you were having a blood draw for your thyroid, or diabetes, no they would not routinely screen that blood for hepatitis.  It would be an invasion of your privacy to do that, unless you specifically asked or gave permission.  The only time they DO routinely screen for Hep B (and HIV) is when you are pregnant.

Tuesday, 26 June 2012

Source of my infection

I had a check-up with heppy doc yesterday.
Amongst other tests taken 3 months ago was a test to 'genotype' my Hepatitis B infection. 
Hepatitis B has 8 subgroups which are prevalent in different parts of the world.  Diagnose your 'type' and you may be able to work out where you where infected, or by who.
I found out yesterday that mine is Genotype A
88% of Hep B positive people in Kenya are Genotype A.
I think that's my answer.
It seems unlikely now that a piercing parlour or a dentist in white middle class South West England in the 70's would have been my source of infection with an East African genotype.
It seems more likely now that something like a mosquito bite during a trip to Kenya in the mid '70's is the source.  I do remember feeling a bit rough for a couple of days, but was never jaundiced or really unwell.

Monday, 25 June 2012

Be a cancer mentor

If anybody reading this would like to be a mentor to someone else with HCC, please check this link out:
It's a US based organisation, but encourages people to link up worldwide, if not by phone, then by email or Skype

Thursday, 21 June 2012

New place for support and information

For those who use Facebook there is a new site called Hepatocellular Carcinoma Companions at  http://www.facebook.com/groups/myhcc/358424547543935/

Primarily for those with HCC or those caring for someone with HCC, the founders of this site are also members of another group on Facebook for Fibrolamellar liver cancer.

The group hopes to develop a community for HCC fighters/survivors.  The more we engage with each other the greater the impact the group can have.

Friday, 8 June 2012


Another letter arrives, this time from North Manchester hospital, telling me the MRI result.  I now have a better picture of the timeline from when the scan was done until the results have been agreed on by all interested parties. 
Scan: 20th April
Scan checked & report made: 24th April
Report checked and letter written to me: 4th May

(so that part went swimmingly.  Unfortunately where it then went awry is that the letter with results went to my GP who filed it away without comment.  Copies should have come to me, and presumably to North Manchester and the surgeon which would trigger a discussion at the next weekly MDT meeting.... but they didnt)

14th May: I start the search to find who has the results of the MRI
15th May: MRI report faxed from Macclesfield to North Manchester at my request
18th May:  I track down the 4th May letter at the GP - 14 days after I should have received it.
21st May:  I get a copy of the original MRI report that has been doing the rounds since 24th April.
30th May: North Manchester include me in a weekly Wednesday MDT meeting, and the surgeon gets the chance to look by video link at the scans.
30th May: letter from surgeon typed to me with results of that MDT meeting (so it took 40 days from the date of the scan for the surgeon to see a copy via video link)
8th June: letter arrives with me.
28th: I will get to discuss this with O'Blimey the surgeon
29th June: I will get to discuss this with Dr S, who had the results back in April!

My next 6 month scan will be due end of October.  Now I know to allow about 6 weeks from start to finish of the process, which in reality could be done in about 2 weeks. 

Saturday, 2 June 2012

MRI gets the thumbs up

Random letter arrives from Dr S, the gastroenterologist, advising that I will continue to be monitored 6-monthly with AFP tumour marker and MRI.  This was approved at the MDT meeting, which most likely means that O'Blimey the surgeon had the casting vote on continuing with MRI scans and not demoting me to ultrasounds.  Good news