Living Without HepC

It’s the day after my 16th injection. I think I am beginning to see a pattern … another day when I am walking around in a “dream-like” state; nothing is getting done quickly nor do I feel any initiative; the telephone message asking if I will do some (high stress) work will have to wait - I started this entry almost three hours ago but had to go off for a shower, have lunch, etc, so I want to concentrate on finishing it. (I will have to tell them later I don’t want any high stress work at the moment.)

I suspect the pattern is a ‘day like this’ follows the day after my injection. Although other weeks I have felt a ‘day like this’ on the day or two before the next injection - so I cannot say with certainty there is a pattern!!

Someone recently asked me in an email: Do you feel worse on injection day? Is it worth arranging that for last thing Friday in the hopes of being fine by Monday?

Both these issues were ones I thought about before treatment started. I think the biggest problem I found and I think others’ experience bears this out - it isn’t really possible to predict how you and the interferon and ribavirin are going to interact!! I only began to find out from experience, after I started. And now, in Week 15 you can see I am still trying to spot the patterns.

Yesterday was my injection day. It has now become so routine that I found myself thinking “there are five minutes or so before dinner, time enough to do my injection”. And I did do the injection and then sat down for my meal - very different than my attitude or behaviour in the first few weeks. I felt no particular effects, although I believe I was sleepier earlier than usual last night.

I had also heard the advice “injection on Friday, and back to normal by Monday”. When I went to Mynurse’s clinic I realised we would be starting a routine of injecting on Mondays - as that was her clinic day to see me. I saw her weekly for a month and then began monthly visits - all on Mondays. We discussed changing the injection day, over time, to a Friday because of the advice I was given.

Mynurse talked with me how to plan ahead and make the switch to another day, if I wanted to do so after that initial period. However, my experience after a few weeks was than the day after the injection was not specifically difficult, and some weeks I experienced a ‘bad’ day on other weekdays, not just the day after. So I couldn’t then see any advantage to changing the injection day from Monday.

I would suggest a good exploration of the Hepatitis C Trust website, under the section called Treatment. There are a number of pages of information on preparing for treatment and managing yourself on treatment, which are useful to consider.

Well the comment about coffee sparked off two comments within hours!! One for, and one against. Perhaps I will add a Forum to this blog where discussions about specific topics like coffee, vitamins, … whatever, can be tracked more easily and added to specifically.

The article Jonathan refers to is from HivandHepatitis.com and the authors wrote, “In this large, national, population-based study, among persons at high risk for liver injury, consumption of coffee and especially caffeine was associated with lower risk of elevated ALT activity.”

Like Paul, however, I too have read that coffee is not good for the liver - and because of that stopped a couple of years ago (except for my holiday treat in Spain - sitting in sunny cafes for the occasional ‘cortado’). It was a comment from Mynurse at the beginning of my treatment that made me change my mind. I am certain she said ignore the warning about coffee and the liver (as specifically qouted in “A Rough Guide to HepC” written by +VE (How’s That Publishing Ltd) - and widely distibuted in the HepC community. I suppose I was happy to hear this advice from her! It could be that she was referring to there being no interference from coffee with the meds…. I will definitely check out what she said on coffee.

Also like Paul, I took up drinking green tea some time ago - and still do occasionally. It is meant to help detoxify the liver. But I find it also makes me thirsty and I have to follow it up with water! I also drink jasmine tea occasionally (which I came across in Tai Chi - very sociably, each class takes tea together during a break in the session).

On a completely different topic - you will see that I have changed skin again - blogskin! Well actually, my son Ben changed it and helped me (well I described what I want to do but don’t know how to and he sorted it) tweak some of the irritating bits of the last version. I hope it is clearer and easier to find your way around the blog now. With Navigation and Content topics near the top of the column to the right - and Links and Techie stuff at the bottom. And, hopefully, a clearer starting place for anyone who wants to start at the beginning!

So I acknowledge my thanks to Ben for the new look. I do depend on his technical expertise and knowledge. That’s an interesting position for a father to be in. It used to be the other way around for so many years. But I have no problem acknowledging his far superior skills with computers, weblogs, websites and the net. I respect Ben as a very skilled techie. You can catch a flavour of this at Ben Metcalfe Blog.

It feels like the past few days have been “life as usual”. Wednesday, Thursday and Fridays are my usual (part-time) work hours - unusually I am also working today. As it is a quiet time during my lunch break I thought I would update the blog!

I felt very tired by the time I got home on Friday evening - and very “hyper”. I have recently started drinking coffee at work - which I haven’t done for several years now, and I wonder if that had affected me. AND the chocolate. I have never worked in an office where there is such a continuous availability of chocolate!! Staff coming back from holidays, special events, etc. all mean there is a regular supply of goodies ‘in the usual place’ in our office.

Two of the women in the team, Kam and Debs, last week brought in small individualised boxes of chocolates for everyone in the office on Valentine’s day - and decorated with balloons, little hearts, confetti and a red rose, etc. All sent from the Mystery Valentine! (There - I have now revealed the secret of who the Mystery Valentine is!!)

As I was saying, I wonder if the combination of the chocolate I had on Friday and the coffee contributed to the ‘hyper’ feelings I came home with. I stopped both coffee and chocolate several years ago as I thought they aren’t liver-friendly foods. More recently, I have heard that coffee is not bad for the liver after all (good news as I enjoy fresh espresso, albeit with soya milk). And one cannot live life without eating the occasional choccy!! The ‘hyper’ feelings are no big problem, but I think that all these details of life become the stuff that people on treatment begin to be aware of, sometimes worry about, and work with!! (Is it a side-effect, will it undermine my treatment, should I change it to improve my treatment chances, etc)

I had a much-needed aromatherapy massage yesterday afternoon. Carol pointed out it was time to clear the toxins through massage and stimulate the lymphatic system to drain them. Jonathan Colam mentions toxins being cleared through massage - and he is right. The massage also helped with the pain in my right shoulder - which I know can be connected with the liver as there is a nerve running between them. I am now wondering, however, if there might be a more superficial reason I am experiencing this - such as strain from using a computer mouse. Either way, the attention focused on it yesterday will help!! And afterwards I felt both energised but tired mid-way through the evening so I went to bed at a respectfully early time (to be ready to come to work at 9 am today!)

I have just returned from a first appointment with my dentist to have a crown on one of my teeth - an appointment originally scheduled during the time I had the Bell’s Palsy (and obviously deferred).

Of course I was interested to test what level of awareness about Hepatitis C there is within my dental surgery. My dentist’s response about their safeguards to minimize the risk of infection and co-infection of blood-borne diseases generally struck me as comprehensive, well informed and considered. He even referred to their consideration of the risks involved in using the same pen throughout the day in the surgery. I was both reassured and confident that all reasonable precautions are taken to protect both patients and staff at my dental practice.

It made me think about my GP’s surgery in comparison. I cannot recall any information or conversations with professionals there which gave me a similar reassurance. Amongst other indicators I have looked for - there are no posters or information about HepC or the FaCe It campaign evident in the practice. My continuing impression is that there is not that same level of awareness about HepC generally within the practice. This may be unfair - I have no evidence that they haven’t considered all these issues within their practice. However, the same person (me) discussing the issue in two different surgeries produced two very different responses - only one of which left me reassured and confident.

It makes me wonder if I should offer to give a talk to staff at my GP surgery about HepC! The NHS has rolled out an awareness programme for healthcare professionals as part of the FaCe It campaign, but it isn’t evident that it has reached professionals within my GP practice.

The rest of my dental appointment went well, by the way, and was remarkably pain free. I have a temporary crown fitted and go back in a fortnight for the fitting of the permanent crown. I have to say I did notice - no flinch at all when it was time for the needle to “freeze” my gums! I do seem to be getting used to needles. (Should I class this as a side-effect of treatment??)

I have recently been getting comments and emails asking for information or advice about HepC. It is very flattering that people might think my experience can be helpful to them. I need to point out, however, that I have no medical expertise or qualification to be commenting on HepC - I do so only from my own personal experience. AND, what I write in this blog may not even be accurate or comprehensible - just look at the last entry to see what I mean!!

Having said that, I am very moved by the issues which people raise and their circumstances in trying to deal with HepC issues. Faeeza recently wrote a comment on this blog:

hi Ron,
I am a desperate sister whose young brother is a drug adddict and is touched with hep C While surfing I”ve come across your journal which is great I appreciate your effort and experience which you have shared with others, especially in countries like mine where no such treatment is available and if so is very costly. I”ll get all your work printed and I’ll read again carefully, may be I can in turn help others fighting with the virus. People is not totally aware of the disease and so on. Here they only know that all drug users have it some may live while others are doomed to die after some years. well Ron only those who suffer an ilness can exactly tell you what it is going though it. It kill an entire family just like actually we are undergoing.
good luck Ron and God help you in your work. One question how much does it cost to treat someone with hep c in your country? please reply soon bye

I hardly know where to begin to reply to this. At one level, I can say that I understand (although I cannot say with absolute certainty) the cost of drugs to the NHS for my 48 week treatment is in the area of £15k - that’s without the costs of tests, clinic staff, medical consultations, etc. And the financial cost to me has only been my contributions to the NHS over my working life. The NHS does not charge me for the drugs they prescribe.

However, I also know that drugs are sometimes priced differently in other countries (for example, we read that drug companies have agreed to make some medications, such as those for HIV, available to certain countries cheaper) - and that different drugs can be used to treat HepC (not just the Pegasys and Copegus that I am on).

So I am not sure this is a helpful simple answer to Faeeza’s query on the cost of drugs.

It’s the part where Faeeza describes herself as ‘desperate’ and her entire family is being ‘killed’ living with this issue - and in a country where there is no treatment, that I find difficult to respond to. This is very painful to think about. I feel very fortunate to live in a place where I can get help. Although we can, of course, throw brickbats about the inertia in this country on the issue of HepC, we are nonetheless eligible for treatment and for help. I also find it very humbling to think that someone would print out the pages of this blog as a means to learning how to help people who have no access to medical treatment.

Sometimes I hardly know what to say…..