Living Without HepC

I felt so alert and ‘with it’ today! Out to the supermarket in the morning, wrote a reply to a letter that been waiting a round for a week or two, did my self-Reiki session, lunch, washing up and realised I had a spare ten minutes before I left for work - time enough to sort through and throw out a number of journals and magazines gathering dust in my study. All ordinary stuff - but so different than the way I have been feeling most days recently.

I am aware I often write that I did very little and describe a day that, to most other people, must sound like a laid-back relaxed day. What is difficult to communicate is the vacuous feeling that underlies this. Almost a malaise. Letter that needs a reply? Don’t feel like it today - oh well. And so it goes on, day after day, with things not getting done.

After a number of days and weeks of this ‘vacuous malaise’, I am pleased to celebrate a day when I felt like I could, wanted to, and did get on with ordinary life!!

I came back from yoga feeling at least 2 cm taller and very exhausted on Sunday - but glad I went as it is the only exercise I am getting at the moment, besides walking (during which I feel very slow and short of breath).

Yesterday I felt very irritable generally - everything and everyone seemed to be ‘provoking’ me. Carol wanted to know what I had planned yesterday morning - plans? I couldn’t collect myself sufficiently to think about what I needed to do. (I felt confronted that I am not organised and ‘with it’.) During a meeting in the afternoon, someone put forward a counter-view to the argument I was making. (Was she deliberately missing the strength and logic of my comments?) I feel I need to temper my responses, although I suspect I may not be effectively doing so.

My injection yesterday went well (and seemed to be the only spot in the day free of irritation for me). I have recently been reading about other people’s experiences of medications and it would seem that Pegasys has fewer side-effects that PegIntron - so I am glad to be on the Pegasys, even if the evidence is only anecdotal. This was my 11th injection - so only 37 to go. AND two three monthly blood tests after that showing that the virus is still eradicated from my bloodstream! The dose of my Pegasys interferon injection is 180 micrograms and I take 1000 mg of Copegus ribavirin daily (2 tabs in the morning, 3 in the evening after food).

Recently I have been looking around the internet to see who else might be keeping HepC Weblogs. Try doing a search! Not many of us out there. Lots of starts but unfortunately the writer didn’t keep up with the entries. Shame as it would be interesting to read through to completion - and we could provide each other with some sort of support!

I was very moved to discover a weblog written by Filosofette in New Zealand, called Hepatitis C Blog. I was touched by the following entry:

My situation is this: I’m a 34-year old woman, recently married, planning children. I donated blood in November 2003, and in February 2004 I got a letter in the mail saying my blood had been rejected, and I later found out it was because I had the Hepatitis C Virus.

I won’t be trying the only known cure for HepC(the old Interferon/Ribavin thingy) because it has a very low possibility of working and just sounds like an incredibly unhealthy way to treat your body.

So I’ve decided to live with the virus, and look after myself as best as I can by eating well, exercising regularly and being positive.

Even though I have a wonderfully supportive husband, I don’t know anyone else in my situation, and so I feel rather scared and alone. I truly hope that someone reading this will make a comment on my Blog, saying that they are in a similar situation, and we can share what we know.

I very much felt like Filosofette in the early days after I was diagnosed and swore I would never host such nasty drugs in my body. How I have changed my views over two years!! I was also touched by her last sentence - so I couldn’t help but leave a comment saying I was sorry she hadn’t written any more - her last entry was in July 2004.

So I was really chuffed when I read today an entry she made recently saying:

I would like to thank the guy who posted the comment on my blog, pointing out that I hadn’t made any entries since October. It brought me back.

I have also discovered, a few weeks ago, Jonathan Colam’s weblog - Killing the Virus. Jonathan is not so far away - Norfolk, and has started a shorter course of treatment because he has a different genotype of HepC than I do. I find it very useful to read the similarities in our experiences and the differences. And I look forward to his comments on my blog as well as checking out how he is doing. He seems much more fit than I am - swimming 1000 metres regularly and weight training. Just writing those down exhausted me. I am putting a link to his site on the side of this page so you can easily go and read his weblog too. I recommned it!

Has anyone come across other HepC weblog? I would be pleased to hear of them so I can visit and read!!

I spoke too soon about not having an ‘off’ day this week! It’s today.

I could describe how little I have been doing today and it would sound like a chilled Sunday - except I feel slightly light-headed and can’t really be bothered to focus on things like ‘what do I have to do today’ etc. So lots of things like contacting people, sending return emails and other jobs I should do have just got left.

I am determined to get to Yoga today as I feel I need the exercise and the stretching. So it’s time to do that now. Perhaps I will add some more to this later…..

The week has positively zipped by for me - although I don’t think I have done anything more this week than usual.

My injection on Monday has now become a routine - a few minutes sometime during the day. This week I noticed a drop of blood at the injection site when I withdrew the needle. I immediately wiped it away (and safely disposed of the wipe) thinking of the potential that single drop of blood has to cause misery to anyone unlucky enough to come into unprotected contact with it.

I suspect most people who are HepC+ have considered how poisonous their blood could be to other people. Because I have thought a lot about where I might have contracted the disease - and can identify a number of places where it could have easily occurred, I feel very aware of how quickly HepC COULD be passed on.

It feels like a responsibility to me to make sure I keep others safe from my blood. For example this means I have got my own electric toothbrush. Previously everyone in our house used our own toothbrush but shared the brush holder and base unit. I realised that over time, some blood from the occasional bleeding gums can end up on the base of the unit, etc. I am aware that the virus can live on, even when the blood has dried and in a very small amount of blood. Apparently the HepC virus lives on longer than the HIV virus in dried blood stains. So I also make sure that my razor is kept separate and away from others. And I carry plasters with me (never before in my life could I have been bothered!!) for the same reason.

All week I was watching out for the ‘off’ day - trying to spot a pattern of when it occurs. Nothing. It didn’t happen this week - I am pleased to say. So much for there being patterns with these pharmaceuticals!!

Work was busy all week, with people calling in to request counselling post-Christmas. I found it quite humbling to speak to several people with chronic diseases much more disabling than mine who seemed to have no support networks or any emotional help coping with their condition - and expect themselves to carry on as normal (but can’t, not surprisingly). It made me aware how much I go on about my health - but then that is what this blog is about! And how fortunate I feel to have support networks in place around me - family, colleagues and friends. Again, I feel empathy for HepC+ people who feel they must keep their medical condition confidential as it then deprives them of the benefits of these social support networks.

I suppose work has made me feel appropriately tired in the evening and I have stopped taking paracetomol before going to bed ‘in case’ I have trouble sleeping. I suspect any medication loses its effectiveness over time through constant use in the body; so I am holding back using paracetomol now until I feel it is necessary again.

At the risk of sounding ‘Bridget Jones’- ish, I have lost the two pounds I gained over Christmas but I think my smoking has increased to about 10 per day at the moment. My head says anyone with a low haemoglobin count and shortness of breath should stop, but my heart says I am still content to follow the advice from various medical people not to worry about it at the moment - although you can see I am not all that comfortable with it.

So what are the implications for Week 12 (which I recently referred to in Week 8 Tuesday too)?

The National Institute for Clinical Excellence, NICE, “make recommendations on treatments and care using the best available evidence” to the Department of Health on a wide variety of medical diseases and conditions.

The NHS have accepted their recommendations in Technology Appraisal 75, Interferon alfa (pegylated and non-pegylated) and ribavirin for the treatment of chronic hepatitis C which outlines the treatment criteria, technology, need for research and other medical matters. This policy for treatment has been accepted and adopted as the standard of treatment that HCV+ people have the right to expect from the NHS.

Amongst the many things outlined in this document is the protocol for what happens at Week 12:

For people infected with HCV of genotype 1, 4, 5 or 6, initial treatment should be for12 weeks. Only people showing, at 12 weeks, a reduction in viral load to less than 1% of its level at the start of treatment (at least a 2-log reduction) should continue treatment until 48 weeks. For people in whom viral load at 12 weeks exceeds 1% of its level at the start of treatment, treatment should be discontinued.

In other words, if my viral load has not dropped sufficiently at Week 12 my treatment could be discontinued.

The document also talks about SVR (Sustained Viral Reduction) and how the results of Week 12 indicate the outcome of the treatment:

4.1.2.5 After 12 weeks of treatment, the viral load in people who eventually have an SVR after 24 or 48 weeks - treatment is generally reduced by a factor of 100 or more. That is, for every 1000 copies of the virus in the bif lood at the beginning of treatment, there would be 10 or fewer copies at the end of 12 weeks of treatment. This is known as a 2-log reduction.

4.1.2.6 For genotypes 1, 4, 5 and 6 (together called G1+), only 70-80% have a 2-log reduction at 12 weeks and, of these, about 60% (40-50% of the total group) have an SVR. Of the 20-30% that are non-responders at 12 weeks, few (perhaps 0.5% of those originally treated) go on to have an SVR.

So, as I understand this, 20-30% of patients do not show sufficient reduction in viral load at the Week 12 stage to continue treatment.

Will I be in the 70-80% group or the 20-30% group? This is the significance of Week 12!!

I have to say I am not so worried because I remain optimistic I will be in the group who are responding to the treatment. After all, my Liver Function blood test results show that my liver functions have returned to normal - after having high ALT’s for the past two and half years (probably longer but they weren’t being monitored before that!). So there is evidence that the medications have kicked in sufficiently to stop the attack on my liver and its functions have returned to normal.

But I as I write this I am aware of how much, like other HepC+ people, I have become an ‘amateur expert’ on Hepatitis C.

I support this notion in one respect. Knowledge is power. Understanding the medical information “empowers” me to take responsibility for my health and my treatment. I believe it is important to take “ownership” of my situation as I have said previously.

On the other hand, there reaches a point where I think I want to keep it simple. I don’t understand much about viral loads. I do know there are several ways of measuring them - the Americans have a different standard than the UK. I don’t understand about “changes to log2″. Nor do I really want to.

It reminds me of my days in secondary school Algebra classes when I used to think - what on earth am I learning about logarithms for - what will have to do with the real world? I can honestly say this is the first time since school I have needed to consider logs!

So while I track my other blood test results with interest I think I will adopt a more ‘laissez-faire’ attitude about viral load test results. I also know that the hospital I attend will first test me with a PCR test - the initial test to see if people have the virus. If that is negative, then the viral load blood test - much more expensive to carry out, will not be thought necessary.

I think my ‘laissez-faire’ attitude would disappear if the question of me not continuing treatment arose - but as I said already I am optimistic that the medications are doing their job. They ought to be - I am doing everything I can to support their work!