HCV Positive

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

Name:
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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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.

Thursday, June 21, 2007

FIBROSCAN





Well since I last blogged I did attend the National Hepititis C Network conference in Derby with my partner Dean, we were only able to attend for the Saturday afternoon due to a landmark birthday for me on the Sunday, but it was fantastic to meet up with other bloggers and people that I had been speaking with via the HepCforum for a couple of years now, including forum patrons old and new, Ron Metcalfe and Martin and Carol Bolton. Nick Green and Vicky Gumbley had done a fantastic job putting on a large scale event for the NHCN and I am sure that the conference was a catalyst for lots of folk to think about setting up support groups and ways of raising awareness.

I hold all these people in such high esteem, simply because of the support they generously poured out when I most needed it. It was fabulous to finally put faces to the names of the many warm and wonderful folk who I have come to know through forum discussion and blogging about this miserable virus. (Whilst it may be our miserable misfortune to bear the HCV virus, one thing is sure, you are in the most excellent of company if you do have it). I am not going to mention all the people I met at the conference individually as there were so many I wouldn't like to offend anyone by omission and that is a possibility with the brain fog.

Moving on, in my last post I mentioned some odd and vague symptoms but forgot to mention one that I find very puzzling, it happens when I am drifting into sleep, I sort of have an internal jolt that I feel around the chest and diaphram, like a sudden contraction in the spleen and surrounding areas, a bit like when you have a shock but not quite the same, or a sudden release of hormones into the thorax, but whatever it is, it brings me back to awareness and may happen a number of times before I finally fall to sleep. It tends to happen when I am not feeling my best and started happened for the first time during my short spell on interferon and ribavirin combination therapy. Can anyone else reading relate to this?

I went back to see my consultant and saw the registrar instead, he asked me if I wanted to start treatment, I was suprised he asked me that as I understood my consultant was of a mind not to proceed with treatment at this time. I decided I would not let this confusion bother me as I have already had much experience by now of the misunderstandings that occur between patient and practitioner when third parties become involved and so I remained passive. What did suprise me further is that he said there would be an 18 month wait for anyone wishing to have treatment. In the end, without any prompting from me, he decided he would like to do a pcr to see what my current viral load is and I am interested to know what this is too, we also agreed to re-run the Cryoglobulinemia test as the last sample had spoiled as often happens when the blood sample is allowed to get cold before it reaches the lab, it is crucial the sample is kept warm..

When I went to have the bloods taken, this time I alerted the nurse that my bloods need to be kept warm until they reach the labs. I said, in a jovial but half meaning it manner, that I believed that some nurses would keep the sample warm by keeping vial in their brassieres, she said, 'they don't pay me enough for that love!' LOL. She told me that she would put the blood sample in a jar of warm tap water and ring the porter to come and collect, but that she couldn't be held responsible if the porter was delayed as often happened. I didn't know what to say to that, but if the test gets messed up again, I'll stick the vial down my own bra and wait for the porter!!! I mean its just not good enough that is it really? If I had been quicker on the day I would have kept the sample warm myself and stayed until I saw the sample go to the lab with my own eyes.

Ok so next on the agenda is the Fibroscan test at the Chelsea and Westminster hospital, London.

http://www.echosens.com/index_a.html

I feel very fortunate to be getting one of these on the NHS and finally have an appointment on Tuesday 26 June. As far as I understand the Fibroscan, like the Fibrosure blood test, is better at predicting the state of the liver at each end of the scale, ie, mild liver damage or severe liver damage, apparently it is not that accurate for middle of the scale predictions. As it stands now, liver biopsy is still the gold standard for identifying how much liver damage one may or may not have.

It will certainly be interesting to find out the results of the Fibroscan. I have been speaking to a lady on the forum who had a Fibroscan test carried our privately recently, the results revealed scarring and possible cirrhosis. However a later ultrasound scan showed no evidence of cirrhosis and the professor she sees informed her it was highly unlikely that she would have cirrhosis. So why are the two results so different? The lady tells me she has had her gall bladder removed and there would likely be scarring in that area after that procedure, the people who carried out the Fibroscan test did not appear to take that fact into account.

I found this story disappointing because even though I knew the Fibroscan was not 100% accurate, I had hoped it would be more reliable than that. Then on reflection I figured that it showed that the scan did indeed pick up scarring and that there are perhaps lessons to be learnt from this lady's experience by the Fibroscan machine operative and analyst. So on balance I still think it is worthwhile to have the Fibroscan test.
Dean and I decided we would travel down to London for the weekend prior to my appointment at the Chelsea and Westminster and spend a few days in the smoke. We will be staying with Dean's brother and wife in Richmond, so I am looking forward to that. We will be just a few days post summer solstice so long, light nights to enjoy. It might be nice to picnic in Richmond Park and I would also like to do a short thames boat ride around London Bridge area, we shall see. Dean will return to Manchester on Monday and I will stay another day to attend my appointment, perhaps even meet up with some people from the forum.

I will share the Fibroscan result in my next post. I pray it will be favourable and unambiguous.

Peace to all in Hep C Land.

3 Comments:

Blogger weege said...

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