HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Monday, October 29, 2007


I had the Fibroscan in June 07, (oops, sorry I haven't updated my blog for so long), the measurement they use is Kpa, I don't know what Kpa stands for but my stiffness score was 7.9 indicating some fibrosis and scarring. The registrar who was operating the fibroscan machine said that score was roughly the same as metavir F1 that I think is classed as mild fibrosis.

The registrar chap also said that a score of 25+ would indicate cirrhosis and in those circumstances they would recommend a biopsy to clarify the situation. I have included a measurement scale below if anyone is interested, but on the scale below it does indicate that cirrhosis may be evident with a reading of 17.6. The registrar was right in what he said, but perhaps didn't realise that I may be sharing information with others who may have a different reading than mine.

After the scan, when I later saw the consultant, (not the consultant I was booked in to see I must say, he had forgotten me and taken the day off!), he said that most of their patients would use the Fibroscan to check the liver annually as it was easy to see any differences from one year to the next with the scoring system. He felt that my result would indicate that there hadn't been much progress since my last biopsy roughly 7 years ago and therefore it would be acceptable in his mind that I would consider waiting for better treatments that may mean shorter treatment duration and better chance of svr.
I got a bonus as I was leaving this brief consultation as the consultant gave me a request card to book an appointment for another Fibroscan in 12 months. Yipee!
I did try to book the appointment immediately but the receptionist said their system didn't go that far ahead, but she promised she wouldn't forget and would put it on the system in 6 months time when she would be able to do this. I will be ringing her well in advance to ensure that it all goes ahead smoothly. I never expected I would get onto their annual fibroscanning list so I am delighted with this outcome, it will mean, as the man said, that I can easily keep track of any damage progression if I continue to defer treatment.
I have got to pay tribute to Jae the Mighty C here, (my friend from the hep c forum and a fellow blogger), because he was nothing short of a blessing for me during my trip to London and to the hospital. He met me yesterday at Richmond station and took care of navigating all the underground journey and the walk from station to hospital.
After my appointment we went to St Paul's cathedral which was wonderful, we prayed for good health for each other and for everyone suffering with hep c, Jae sent out special prayers for Rosi too who has haemophilia and hep c like he has. We lit candles and wrote out prayer requests for all with HIV and HCV then we popped them in a little box where I understand they are then prayed for again later by the ministry there at the catherdral.
The cathedral itself was spectacular and we had a little surreal moment when we sat in a small courtyard later at the back of the cathedral and this guy in a tuxedo, came gliding around the corner on a mobile grand piano, playing for everyone and anyone! LOL
Jae then kindly accompanied me to Euston for my journey home, a friend and companion above and beyond the call of duty. Thank you so much Jason you were so charitable to me, all I can say is that you really shine Jae and it was an honour to meet you and I hope we meet again in the future.

I got some further information regarding the fibroscan, the link was given to me by a fellow hep c warrior, Robert who has established a hep c knowledge base on two forums, on both the old hep c forum and the new Hep C Friends forum. Thank you Robert :-)


I also got the fibroscan table below from another marvellous lady called Nikki who moderates on the new Hep C Friends Forum. Thankyou Nikki :-)

As you can see from this table, my score of 7.9 puts me just above the cut off point of 7.2 for mild fibrosis, however I am still on the low side of moderate, so that's something to be thankful for.

Moderate(F>2) Severe(F>3) Cirrhosis(F = 4) ..........Moderate(F>2)........Severe(F>3)........Cirrhosis(F = 4) Cut off........7.2........ ................12.5................ 17.6 PPV ...........90 ..........................90.................. 91 NPV ...........52 ..........................80 ..................92 Sensitivity ..64 ..........................65.................. 77 Specificity ...85........ .................95 ...................97 PLR........... 4.2 ........................13.7 ................28.4

I don't have a link to the new Hep C Friends Forum in my side bar, I will have to update it sometime, but for now I will add a link here for anyone who is looking for advice and support or simply a friendly chat with others who understand what is it like to deal with hepaitis c as a sufferer or as a carer. I am sure you will receive a very warm welcome.


The photo at the top was taken in Calabria, southern Italy in September 07.
Apologies for the lack of spaces indicating new paragraphs, but for some reason blogger is not allowing me to put in double line space?!
Good wishes to all who struggle with Hep C in one way or another, whether you have the virus or you care for someone who has the virus. Don't struggle alone, join one or both of the forums and get yourself a Hep C buddy. You know what they say, a problem shared is a problem halved.


Blogger The Dude said...

Very encouraging news good to hear Misspoppy. Long may u prosper..twiddling my ears for yer
all the best The Dude

9:22 PM  
Blogger Jason Paul Tolmie said...

Hi Miss Poppy:)

Great to hear from you over on my blog:) As you can see I've been pretty busy with my cycling.

Talking of which, I'd be happy for you to send a link to my blog to Max.
I haven't had any comment from a Max yet. But let him know that I don't bite and like to do a bit of mountain biking myself;)

I'd Love to see an update on your blog, what with all the wonderful exotic places around the world that you have probably been to since you last posted;)

Take care my friend:)


11:46 PM  

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