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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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

Thursday, June 21, 2007


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.


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.

Thursday, March 29, 2007


Sometimes when you have had a run of feeling good, you kind of forget you have the virus, then.................

I have just had a wonderful, warm, month long holiday in beautiful Thailand. I ate well, exercised daily walking laps of the beach, had lots of rest and lots of sunshine for the duration. I could have sworn I didn't have the virus. I know the photo is of Luxor where we were in February, but I've yet to download my Thailand photos. I always seem to be behind with the photos, but hey, at least I'm managing to post them at all.

I have been home only a week and it starts again, but now when I get, what I suspect is a viral flare up, it has a few extra symptoms that only joined the circus after my brief affair with tx.

It's all vague and non specific and I am not prepared to go to my gp while she looks at me like I've got two heads and wonders, 'what the hell does this woman expect me to do?'

Basically I get a kind of internal numbing feeling that appears to follow nerve, or perhaps meridien, pathways, always on the left side, its not a static feeling, it is sort of like a moving wave, that always hits the same places in patches, the back of my arm, my neck, throat, chest, hip and thigh. What is even more odd is that for instance with my thigh, only the top outer quadrant is affected, same with my arm, it doesn't affect the whole of my arm. The sensation is uncomfortable and irritating, though I wouldn't describe it as pain I do wish it would stop and it hampers my performance. I feel it internally too, my left lung the roof of my mouth

The next thing that happens is that my breathing goes slightly out of synch and I feel as though, if I was a car for example, I would say my engine is misfiring. It is very difficult to control the breath at these times, I get very agitated and it is almost impossible to implement slow, deep breathing and I am aware of the numbing sensation in my left lung. I become sort of hypersensitive, to light, noises and movement too, I can usually still continue to work, but it makes life difficult and it is also anxiety making and my nerves feel shot.

Whilst I have had these symptoms this week I visited my local tesco store, they had rearranged the store, cramming a whole load of new refridgerators in there and typically making the aisles even more congested and harder to negotiate. What I noticed in my sensitive state was that as I walked in and began to walk alongside the bank of fridges, that I felt weak and confused. As I stayed with the feeling I realised it was the fridges and the humming that was coming from them, when I moved to other parts of the store the sensations were subdued.

So how about that? I am sort of pleased that I have been able to give some sort of description of symptoms, I am able now from familiarity to pick out specifics of some of what happens. As the mind is usually foggy and sluggish too at these times, a description of symptoms usually ends up as vague as, I feel odd, strange.

Other news is that I saw my consultant again in November, she reported my scan was fine but wanted to test me for Cryoglobulinemia as she said my rheumatoid factor was raised. We discussed whether it was useful to have a biopsy considering that the treatment option was not something we wished to rush into right now due to the reaction last time around. We agreed that I would give it some thought and let her know at my next appointment which was scheduled for March 07 but was cancelled by the hospital and rearranged for May 07.

In the meantime I contacted Sam from the Hep C Trust and got some info on where I could find Fibroscan testing equipment in England. I contacted on hospital and was told they could test me as a NHS patient if my GP referred me. Great! My GP agreed to refer, but I chased that up this week, only to be told that the referral has to go via the PCT to be approved for funding and that the PCT only meet monthly so that decision would be made whenever they next meet, which could be next week or 4 weeks away.

If I get the go ahead for the Fibroscan test, I may then, dependent on the results, back that up with a Fibrosure blood test which I would have to pay for. If these tests conclude that there is only mild inflammation then I may delay having a biopsy for a while.

When I called in to see my GP about this referral, the first thing she said as I walked in the door is, 'your cholesterol is very high, we need to do a test asap'. Well I wasn't expecting that, I wondered when she would have told me if I hadn't gone to see her that day, the last time I had been to the surgery was 7 weeks ago regarding a shoulder injury. I also forgot to ask how high was my cholesterol. Anyway I have that blood test tomorrow and I will start my 14 hour fast this evening.

The other thing about blood testing is when I was tested for Cryoglobulinemia, I am sure they are supposed to keep the blood warm after they have extracted it. I saw no evidence of this when I had my bloods taken in November, so I hope they have done it right. I have heard that it is quite a common occurance that with this testing people often get a false negative result because bloods were not handled properly.

Ok I wrote all that then got a call from my surgery to say they were finding it very confusing to refer me for the Fibroscan, it is all too complicated even for them! I do hope they sort it out. Whilst they were on the phone I asked about the Cryoglobulinemia test result, and surprise, surprise, they say they will have to run the test again as the hosptial suspect it is a false negative as my rheumatoid factor is raised. Well, well, more fun and games to look forward to in May when I return to the hospital.

Finally Nick Green is organising the National Hepatitis C Network annual conference 14/15 April in Derby. I would dearly like to attend if only to meet up with other forum members, the problem is that it is my birthday that weekend and so there is a major clash of interests. I have still not come to a final decision, but a lot of thought is being given on how to make it happen, I would so like to meet other forum members. Here's the link with the info for anyone else who may be interested to attend.


OK its been a long time since I have blogged, I just needed to step back for a while and then it became a chore whenever I thought about it. However today I got a comment from my last entry from Joeboy and I thought it is time to update, so thanks Joeboy for getting my butt into gear.

Sunday, October 22, 2006


I went to see my new liver specialist, Dr Rachael Harry, 18 October 2006, immediately she dismissed my consultant, Dr Blahblah's claims about transplant and said she didn't think I needed to be assessed for liver transplant at this point from what she could see and from what little information she did have. I explained very briefly that I felt there were problems with my last consultant and she told me I would never have to see him again.

Dr Harry and I agreed we should start afresh from this point in time and she gave me a physical examination, palpating my abdomen and checking out the spider nevi, and arranged for a large array of blood tests and a ultrasound scan. The bloods were taken that day, the scan booked for 30 November and I will go back to see her, hopefully around December for the results, her secretary will write to me with the next appointment.

Dr Harry explained that although the ultrasound scan will not give a clear indication of inflammation, or damage progression, it would pick up cirrhosis if there was any. She suggested we wait for these results and then consider whether a biopsy would be the route to follow.

I mentioned the blood clotting problems alleged by Dr Blahblah, she said she had received no notification about that but would check my bloods for that too.

We discussed future combination therapy, she felt that as I had reacted so badly to the interferon the last time I tried treatment, she felt it was highly likely that I would have the same reaction if I tried again, even if we switched to another type of interferon. Again we agreed to look at the afore mentioned test results and consider what those reveal before we look at treatment, and although Dr Harry felt it was perhaps not the best thing for me to undertake treatment again, she did say that we would discuss it at that time and that she would take my wishes into account.

Wow! I have not been used to such reasonable and straight forward dialogue before. I immediately feel that I trust this woman and feel happy to be under her care. So that is a real load off my mind to say the very least.

I am going to try and move on from all the negative and damaging stuff that occurred with Dr Blahblah. I did draft a couple of letters to him regarding his claims, his care, asking for clarification on blood clotting issues etc., etc., but for now I have decided to just move forward for my own sake, so I deleted them without sending. If anyone reading this blog is interested, or concerned to avoid being under this man's care and attending a Manchester hospital, you may email me for his name.

There was lots of stuff I didn't ask Dr Harry because in sod's law style I felt quite unwell on the day of our appointment, fighting off one of those viral infections that are flying around everywhere at this time of the year. Next time I see her I would like to discuss where I would stand in regards to being considered for future new treatments should the Vertex VX-950 trials continue to meet their targets. I would like to clarify whether she would be able to administer VX-950 as a mono therapy in the face of my apparent interferon intolerance.

As far as I understand with these trials, there are 3 trials to consider. The first trials showed that 14 days VX-950 as a mono therapy significantly reduced the virus for nearly, if not all, the participants. Since then it is not clear whether further trials are in place to assess if the virus came back when treatment was stopped and/or to determine what dosage and for how long would ensure total clearance and SVR.

The second trial is to determine the efficiency of VX-950 in combination with Interferon and the third trial for VX-950 with both Interferon and Ribaviron. It appears that future treatments are looking to use VX-950 in combination with at least Interferon and that would not really help me, so I would like to hear much more about VX-950 as a mono therapy rather than a combination therapy.

Here's the link to the Vertex website for those who wish to read more about this current research with Telaprevir (VX-950), to give it its full title.


Apart from HCV I enjoyed a welcome sunny break with my friend Tina in Marbella, followed by a fabulous short break in Prague with my partner Dean. Apart from the sun, Marbella is same old, same old, but Prague was an architectural feast and I would recommend this destination for a short break to almost anyone.

I recently bought myself a new, digital camera and had ideas of sharing some of my photos on my blog, but my laptop has other ideas and will not recognise that my camera is plugged into it! I have tried rebooting the computer but it still doesn't recognise the camera, so what to do next? I'm not sure, I bumble my way through all this technical stuff, but maybe next time if I've sussed it out, I can show off my shot of a praying mantis sat on the gate by the swimming pool in Marbella or the medieval vistas taken from the Vltava river in Prague.

In the meantime and instead of the above, I have posted a picture of a part of the Rochdale Canal where Dean and I did a little cycling this summer. Lovely isn't it?

Before I sign off I would like to thank everyone who took the time to give reassurances when my consultant had filled my heart with fear with regards to liver transplant, your comments did help me to keep a balance, reduce my panic and put that madman's comments into some kind of realistic perspective, thank you so much.

Thursday, September 14, 2006


I will tell you a little story regarding the mystery of the blood clotting issue mentioned in my last post.

I had my biopsy 5/6 years ago and was told all was well with just a little inflammation to my liver. However a couple of years after the biopsy, I found I kept getting splinter-like marks under my finger nails, they began to occur regularly every few months and eventually I began to investigate what they could be. I read that these splinters were in actual fact dried blood in the nail bed and could indicate endocarditis, (a serious heart condition), or blood clotting problems.

The next time I saw my consultant I mentioned the splinters to him. He, explained them as trauma to my nails caused by me knocking them. I didn't agree, I thought that if it had happened only once or twice perhaps this would have been a valid reason, but I was sure I wasn't knocking my nails any more than I had been doing the previous 40 odd years of my life. I said to my consultant that I thought it odd that this should happen so frequently now and asked did he not think they could be indicative of the blood clotting problems that I had read about.

He gave an exasperated sigh as he told me that no, they did not indicate clotting problems, and in his usual fashion dismissed me as a bit of a neurotic. I didn't argue, I just hoped he knew what he was talking about and I was of course glad that I didn't have blood clotting problems.

It surprises me now though, that out of the blue and in the midst of telling me he thought I might be showing signs of liver failure and it was perhaps time I went on the transplant list, that he also made the point of telling me that I had blood clotting problems and that they had discovered these problems at my last biopsy 5/6 years earlier and he further stated, that he had discussed this with me at the time!!! What utter nonsense, we have never had any such discussion!

He has never alerted me to the fact I had blood clotting problems and when I said this to him, he insisted he had told me. I left it there as I have been there before with this man on a classic, 'oh no it isn't'/'oh yes it is'. I wasn't feeling well and I was too shocked by the other stuff he was saying to challenge this almost throw away remark he had slipped in about blood clotting. It is only on reflection that I have had time to process all this stuff and consider the implications.

He advised me at that time that if I had any more migraines I was not to take paracetamol but aspirin instead. I presume he means I should use aspirin over paracetamol for any pain whether migraine or not. Presently I am too nervous to take any painkillers until all this has been clarified.

By now I just do not know what to think. If I had blood clotting problems since my biopsy, then why did he pooh pooh my suggestion about the cause of the splinters and not even allude to clotting problems when we had that conversation? Why has he never advised me before about taking aspirin instead of paracetamol. I wonder if any other medical personnel should have noticed this clotting problem, and if they did, should they have told me about it?

About 18 months ago I was admitted into hospital as a day patient to have a polyp removed from my womb. Would this blood clotting problem have been brought to my attention then, or indeed at any other surgical procedure I have had over the years?
I wonder is my consultant correct to advise me to use aspirin, I heard you shouldn't use aspirin if your blood doesn't clot well? And what exactly is the nature of the blood clotting problem I have, does my blood clot too much or too little? My mum has had 2 DVT's, so I suppose I could be quite a high risk in that respect, I wonder if I should be actively doing anything or avoiding anything?

So I am left with more questions than answers and a sinking feeling about discussing anything that he has said directly with the man himself. I don't think he knows his head from his a**e and that is quite comforting in some way considering what he is trying to sell me now, liver failure and a transplant!

I am still awaiting my appointment with the liver specialist which I am advised, after calling them today, that I should recieve quite soon, possibly October. In the meantime I am feeling not so bad at all, which is very nice indeed. I just hope this liver specialist is not going to see me and then send me back to my consultant.

I feel that I am finally coming out of the depression caused by the combination therapy, which is about right because I have now got an appointment to be assessed by the mental health team at my local hospital. Because I am feeling so much stronger mentally, I feel have got a much clearer picture about what has been happening to me the last 12 months, and I have certainly been in a bleak depression, exacerbated by the lack of coordinated care by the medics, from my consultant who told me I wasn't depressed despite the fact I would break down crying at the drop of a hat, to the specialist nurse who said she could offer me no support as my medication had been stopped, to my gp who said she had not met anyone who had such a reaction to the meds and admitted she didn't know what to do, to the counsellor who I waited 3 months to see, who after 2 sessions went off sick long term and I never got a replacement to this day, still waiting......

In real terms I got zilch in respect of support to manage the after effects of treatment, not even an acknowledgement that that was in actual fact what was wrong with me. I am not alone in this lack of support, that's the situation for many in Hep C land. The good news is, I am finally beginning to get over it.

After my last appointment with my consultant when he said he thought I should see a psychiatrist, I then went to see my semi locum gp Dr Z suffering shock from being told I have possible liver failure and it might be time to put me on the transplant list. Dr Z said I should go to see the mental health team as I was sinking further into depression with the news, and if I did have to undergo liver transplant I would need support, and further, that these people could prescribe a wider range of antidepressants than a gp and as I had had a bad reaction to these in the past they may be the best people to prescribe. So in the spirit of compliance I agreed to go.

Another train of thought that was developing as my mental health was returning was that, if I have a liver biopsy through this new shiney liver specialist, and if the biopsy shows increased liver damage, and if the specialist doesn't think treatment may kill me, then it might be prudent to be on board with the guys who can monitor and advise me with the correct/best anti anxiety anti depressants to use at that time, and if I take up treatment again Iam certain I would need these pills in my system well before I start. I really do not intend to start on any antidepressants just now, not as my mood is definately lifting recently.

I do have just one more little niggle going on in my mind, and its the letter my consultant wrote to the liver specialist, at one point he says, '..... Under the circumstances, I would be grateful if you could review her query biopsy, query referral to Leeds for possible transplantation, depending on your thoughts. ....... ' Now I don't know about you, but to me that reads as if it is me who is querying biopsy and transplant. Probably just medical speak, but he is such a slippery git, imho, that I wonder what he is up to.

The only time I queried a biopsy was last year when he told me he wouldn't give me treatment because it would kill me, I asked if he wouldn't do a biopsy to ensure the damage to my liver hadn't progressed. He said, 'What is the point of knowing you have liver damage when you can't have the treatment?' I rightly or wrongly reminded him at that point that I had genotype 1b and he should be aware that that strain of HVC can cause liver cancer without the intermediate cirrhosis. His reply was, 'even if you had cancer I would not give you treatment'! Of course I was very ill from the combination therapy and I was alone when he said all this.

So I wait until October for my appointment with the liver specialist. The appointments coordinator said there was a note attached to my file from the specialist to say I was to be seen in 2 months, I pointed out it had already been over 3 months, she said there was nothing she could do but wait for the extra clinics being put on in October. In my favour, she said on a list of 50 people I was about 5th, therefore I should hear something soon.

In the meantime I am going to Marbella 25 September with girlfriends for a week. I return UK 3 Oct catch my breath then fly to Prague with my other half for 4 days. We are meeting up with an old housemate Stanislava who uded to live with us a few years back and her Partner Marek, who have kindly offered to show us the sights, so I am looking forward to that.

We return UK on 10 October and I see the mental health team 11 October. I must say it makes me giggle everytime I say mental health team or that I am having a mental health assessment. Perhaps this means that I have finally gone mad.

Hope all is well as can be for all those battling with HCV and for all those supporting them.

Monday, June 12, 2006


I am in shock. I have not been feeling so well, but my consultant has always maintained my symptoms were not hep c related. I have recently come to the conclusion I may have Myalgic Encephalitis, Chronic Fatigue Syndrome or something like that, its diffcult to get a diagnosis.

The last time I saw my consultant was in February before my thailand holiday when he had told me that my viral load had escalated to 4-5million and he wanted me to have a quantiative pcr test in May to ascertain whether the high VL had dropped or at least levelled off. He said if it was rising he would be considering putting me back on treatment which was a total about turn from his previous claims that treatment would kill me.

I decided I would just go along with whatever he suggested and get the results and then change my consultant whenever I felt up to it. Today I went back to the hospital for the blood test results. I rang my consultants secretary first to ensure the results were back as I felt very poorly and didn't want to go to the hospital if they had not come back. The secretary assured me they were back but I would have to speak with my consultant for the results.

Recently my symptoms have flared up, and today I got up feeling like I had a hangover, this happened last week too and after 2 days of it I got a classic migraine on the 3rd day. I have been very tired and lacking in concentration and generally unwell.

When I got to my appointment I explained my symptoms, I'd brought a list as I always struggle to get him to listen.

Very fatigued.
Waking up with hangovers, which were very severe last week making me feel like my brain was swollen.
Having strange turns if I do normal amounts of activities.
Classic migraine last week.
Exercise intolerance, if I use a part it hurts.
Muscles feel like lead, don't feel I recharge properly after rest.
Joints playing up, neck, wrists, hip, shoulder, ankle, knee.
disturbed nerve pathway sensations.
Poor memory.
Lack of concentration.
Difficulty word finding.

I managed to tell him most of the symptoms, apart from the last one or two. He asked me what I took for migraine, I explained I only got them once every few years so I just had paracetamol to hand. He suggested I didn't take paracetamol anymore, that I'd be better with aspirin because of my liver. I was puzzled as I thought we were supposed to stick with paracetamol.

Anyway all those thoughts went out the window when he told me that the blood test hadn't been carried out as the blood was no good as it had clotted. He says it sometimes happens especially if they have had difficulty getting the blood, and the blood nurse had struggled taking my blood that day.

Then he sent me into mega shock when he said I have decided to refer you to a liver specialist at another hospital as it may be time we put you on the TRANSPLANT LIST!!!!!! WHAT????!!!!!

'It can't be true, it can't be true,' I cried. I admit I reacted badly, I saw this death sentance being passed, I turned to my friend and took hold of her hands, I couldn't look at my consultant. 'Tell me what this man is saying isn't true' I cried. 'How can you say that' I then said to my consultant, 'you have insisted there is nothing wrong with me, I have even been to see a neurologist because you have maintained my symptoms were not related to hep c!'.
'I'm telling you from what you are describing today and the increased spider nevi on your hands and palms.' He said.
'But I've always had those, I've shown them to you before and you weren't interested, and you've dismissed my other symptoms before.' I said.

Oh you know what I can't be bothered to go thru the whole nasty exchange, but then he decided to inform me, whilst I was visibly shaken and crying, that because last time they did a biopsy they had problems with my blood clotting, this new specialist would probably use a new procedure where they cut my neck and go in from there! I was horrified, 'You have never mentioned problems with my blood clotting before' I said, even before I was put on tx when he was suggesting another biopsy he had never made mention of any special problems, neither had any comment been made after my last biopsy.

Mostly I couldn't believe this man wanted to describe a horrid procedure that he was not going to be involved with, and would be the responsibility of another consultant, when he had already given me shocking news. I thought he was cruel, that news could surely have waited?

He argued the toss, I couldn't believe this man felt that he would give me a graphic account of how they would take a liver biopsy from my neck when I was so distressed and trying to understand how an appointment for bloodtest results could end up as a place on the transplant list and a possible death sentance.

He argued about everything I said, I tried to make sense of how he could have been dismissing me for so long then right out of the blue come up with this. I kept repeating, 'How can you say this?' I saw him roll his eyes at his assistant and she sort of shrugged. I wondered how others took this sort of news after years of being told there was nothing wrong, only minimal liver damage, go away and forget everything, you think too much.

I am glad I am going to be seen by another consultant, I was going to request this anyway he just got there first, but I believe he is trying desperately to do a character assasination on me. I even wonder if he has purposely tried to freak me out so he can discredit me as mentally unstable. We had a lot of words about the letters he had written to my gp etc, when I tried to speak he tied me in knots, I insisted that as I was not well and with brainfog and the symptoms I had described it was not the best time for him to be verbally sparring with me.

He made a remark about all the other consultants I have seen, I reminded him that I had seen a gyneacologist for endometriosis and and endocrinologist for my low thyroid that is all apart from the consultants I saw in his absence when tx went pear shaped, and the nuerologist who I went to see because he himself had dismissed my symptoms as unrelated to HCV. In the course of that exchange I mentioned that the nuerologist had asked me if I would like him to refer me to a psychiatrist as he could find no hard evidence of nuerological problems, and I had refused. My consultant was a quick as anything in saying that he too thought I needed a psychiatrist. He then went on to say that in fact it would be crucial as to whether I would get a transplant because they would have to assess whether I was mentally stable to recieve a liver transplant.........

So he is stitching me up. I am not mentally unbalanced. I will not see him again, but I feel he will have a field day with what happened to day. I believe he was inciting a dramatic reaction. Who, with any sensitivity would proceed to unnecessarily, graphically describe the biopsy from the neck procedure to someone reeling in shock? I cannot see him again, if I do need a liver transplant he will undermine me.

I wonder, because he surely knows by now that I have received copies of all my medical records, whether he suspected I may be making a complaint about him. Making complaints has not been on the agenda, I haven't got the energy or clarity of mind, I just wanted to understand what has been going on and I suspected my consultant was undermining me, I was correct in that respect. I am wondering whether he just wanted to get rid of me and wanted to discredit me so he could build up a defence should I have complained.

I reacted so badly because he has been insisting for so long that there was nothing wrong with me, I have felt like a nuisance. When I got my medical records from the hospital, (I wrote about getting my records in another post), I was upset to read what he had said in one letter to my GP, 'This lady is looking for an illness, sorry I cannot oblige.' He not only dismissed my symptoms, his remarks encouraged others to do so too. This man told me when I was poorly from the treatment experience that he would never give me a biopsy, he claimed that because he would never give me treatment again there was no point in knowing if I had liver damage. How come now, he thinks it might be time I went on the transplant list? I have the same stuff going on, just a bit more frequent.

It's a bit like my gp saying I had a sore throat when I was dying with malaria. There must be something about me that makes medics think I am exagerating my symptoms or making them up.

He called the bloods nurse in to take fresh blood, I will get the results on Thursday. I called my consultant's secretary later and asked for copies of any letters he may write to my gp or the liver specialist.

When I see the new liver specialist I will not be carrying the baggage from this consultant, I want to ensure we have a mutually trusting and respectful relationship which is how it should have always been.

Monday, March 13, 2006


The sweet smell of incense meanders along on the balmy, early evening air, the exotic fragrance tugging on the senses, the tangled, grey beards of smoke spiralling upwards making the approach of the huge, and surprisingly dozy mosquitos a little more difficult. The mosquitos are so big you can sometimes feel them land sneakily on the back of your arm or leg, these guys don't carry malaria but even so we spray any exposed bit of flesh with an aggressive sounding preparation called 'Off!', 15% DEET, I'm not even reading the label, if I do I may not want to use it any longer, and when these beggers bite, you know about it.

It is mosquito time as I write. I like this time of day not just because cool and offers relief from the intense tropical heat of the day, but because the flowers seem to increase their vibrations in this light and make a final enchanting display before they are hidden for a spell under the cloak of the star spangled nightfall.

I am sat on the verandah of our bungalow which is set back off the beach in a verdant jungle garden. To my left are the vibrant reds and yellows of flowers that I think are called birds of paradise, a fitting name. Coconuts are hanging in rich abundance from the palm trees that surround us in many showy forms of fronds, fans and ferns, alongside fruit trees of mango, papaya and banana, all in jurassic proportions. Soon we'll have twilight when the place begins to buzz and hum as all the night insects come to life. It is lush, the hammock beckons.

I step out each morning and praise God, everywhere I turn I see beauty and I am aware that I am in the presence of the Master Artist Creator, then a couple of gaily coloured butterflies come dancing lightly by just to add the finishing touch, His signature. Glorious, let everything that has breath praise the Lord.

For a while back there I thought I may never feel this way again, alive. I recall sometime in September/October 2005 shortly after the treatment I went to the local park with my mum and my partner , I had no sooner walked away from the car park than I had to sit down weak, shaking and afraid of what was going on, not really getting answers or much in the way of support from the NHS. I was so depressed I began to think I would never recover, I cannot adequately express my joy now to realise that in those dark times, this wonderful experience was waiting for me just a little way in the future.

We flew directly from Bangkok to Samui and hung out for week there to acclimatise with aircon, cable tv and a swimming pool. The journey left me completely frazzled and I needed the week to recover. We spent some time visiting with my partner's younger brother, his wife and 7 year old son who are living there. We stayed in the Big Buddha area of the island, we like to avoid the over-crowded Chaweng with its thumping, techno-mashing clubs and girly bars.

This year though, to our dismay, we found a girly bar had sprung up in our neck of the woods, the aptly named Beaver Bar! Each time we drove past this bar on our motorbike my partner would shout Booh! which made me laugh and didn't effect the slow trade there at all.

When we had thawed sufficiently and were able to survive cold showers and without aircon we made our way to a much quieter spot on the more remote island of Koh Phangan which is where we are now. To get here you must take a ferry and then transfer to your chosen resort by small fishing boat, or, a 45 minute white knuckle jeep ride through virgin jungle along a road that is little more than a crator packed dirt track in parts. To reach this particular spot there is a third way where you can get an old fishing boat that pulls up directly on the beach here leaving you to wade in the final few feet onto the beach with your luggage held above your head, and this is how we arrived.

My partner's other brother and wife are here on this island, the wife teaches yoga, they are living at the opposite side of the small bay to us about a 20 minute walk from our bungalow. They had promised to meet us on the beach when we arrived as I was unsure I would be able to navigate wading and fagging luggage and true to their word they were there waiting. This made our arrival easier and was much appreciated as it was a rough old crossing, I was sick on the boat and it was very, very hot.

We sometimes visit the brother and wife, their bungalow is basic but in a beautiful situation over looking the river with jungle beyond. There is a monkey at the back of their bungalow on the river bank called Kai, he is a young, working monkey, trained to climb the tall coconut trees and collect the coconut. He stays here on a length of chain between to closely spaced trees and his owner Mr Sin has erected a plank between 2 rough, timber supports with a large plastic bucket fixed to one end, giving Kai a variety of platforms for spring from and the bucket offers a place to sleep,

It has been a privilege to pass time and share space with Kai and I am sure he enjoys our company too. Every afternoon Mr Sin's 2 pet dogs come bungling down to the water's edge excitedly wagging their tails and barking as Kai swoops down to tap one of the dogs on the jaw or to twist an ear before swiftly swinging back to the safety of a higher branch. The dogs bark and yelp jumping up to catch our crafty friend, but he is too smart and too fast for them as he takes cheeky swipes at them again and again. They all appear to be having riotous fun, and we the spectators are fabulously entertained.

There is so much more about our time here and island life that I would like to share, the thai people we know like Picum whose husband was shot dead by rival thai mafia, or Charm who we have know since he was a shy 15 year old teenager who is now a 33 year old lady boy running an internet cafe, but this is my hep c blog and I'm paying by the minute for this post!!

I do want to say though that I have been following my herbalists advice and avoiding wheat, yeast, soya, milk and coffee and taking ther herbal medicine she prescribed. It has been quite easy to do here as I've just stuck with the asian diet which doesn't usually include those foods anyway, apart from soya, and luckily I am not a coffee drinker. I have walked up and down the beach a few times daily and amazed myself recently by breaking out into a sprint occasionally! I have lost a few pounds in weight that I possibly gained when I stopped smoking, so its all good news, at long last!

I recieved another bit of good news while I have been here that my project has gotten funding for a further year and there were no redundancies in the end, so that was a relief I still have a job and will be back to work by end of March.

So its good bye for now from the land of sunshine and coconuts.