Living Without HepC

My recent posting about vitamins (Week 12 – Monday) prompted several comments from readers. So I went back to have another look at what I said.

I reported I easily get short of breath – and Mynurse pointed out my haemoglobins are low, so I am clinically anaemic. I asked if I exercise more will this help? No, I will just be more out-of-breath. Should I take vitamin supplements like iron if I’m anaemic? No, the interactions between the vitamins and the interferon becomes complicated – especially iron. So what can I do about being anaemic? Nothing, short of stopping the ribavirin. (This is not an option!!) Actually Mynurse pointed out it is only because of the drugs I am anaemic and this will continue (with her monitoring it closely) until I stop the medication. So, I am anaemic and will continue to be short of breath – no need for any intervention unless I get chest pains (which I don’t – it’s a much milder response than that).

I think it is a case of “I know what I meant when I wrote that” rather than it being a comprehensible statement. In fact I think I have been sloppy in the distinction between vitamins, vitamin supplements and minerals. Perhaps I could blame the “brain-fog” or fatigue on the day I wrote this – and possibly it’s lack of knowledge or confusion on my part. Maybe they shouldn’t let me loose on a keyboard at all….

So, in response to some of the comments or confusion I may have caused:

I know vitamins are good for us and I believe my diet is a good source. For example, we regularly eat organic spinach and I think this is a good source of iron, making supplements unnecessary. Mynurse was not saying vitamins are not good for us!

Because I concentrate on maintaining a liver-friendly diet I haven’t needed to take vitamin supplements – but was wondering on that day if doing so could improve my blood results.

Introducing iron into the discussion seems to have been a real red herring! I have no idea now why I asked about it specifically when I was meaning to talk about vitamin supplements generally.

Buzz Trexler, who writes a blog on his HepC treatment called Gathering Wool: Tales of a Black Sheep Living in Post-Christian America has pointed out that excessive iron in the liver can lead to a disease called hemochromatosis. I know two members of my HepC Support Group are co-infected with this condition and HepC – apparently a rare occurrence in the UK. So I know there is wariness about recommending iron during treatment.

From my conversation with Mynurse I realised that the anaemia is induced by the Ribavirin and won’t really resolve until I finish the medication.

On the issue of feeling breathless, I wanted to check out with Mynurse – if I am feeling breathless, will increased exercise improve my breathing? From my conversation with her I realised the breathlessness comes from the meds and will not really improve until I stop taking them. So, I know that exercise is good for me and that increasing my exercise at the moment, however, will not stop the breathlessness.

There, I hope I have written that more clearly – and that I haven’t misguidedly and inadvertently made any controversial statements in the process!!

Like I experienced the last time I came back from Spain, I found I had to “squeeze” myself back into life in the UK – schedules, appointments, etc, although this was a quicker and easier process this time.

I have been feeling very energised from this short break. And feeling like I could get back into a more normal everyday routine. I have been thinking I have enough time during the week (when I am not doing my part-time work) that I could begin to take on other activities in my life. I haven’t done any watercolours for months now and I stopped going to Tai Chi and Chi Gong ages ago. There are probably work projects I could develop as well.

However, when I look at what I have done today – it has been very little. I keep Mondays clear, as a day for appointments with Mynurse at her Clinic and for my weekly injection, but today have had no commitments outside home. I realise I am still taking ages to do very little. I have answered emails, made a few phone calls, surfed the net on the usual HepC sites, been to the supermarket to collect water and drinks (and done my self-Reiki, had meals, chats with Carol and had coffee with a Danish pastry). Not a lot really.

Perhaps it a case of the spirit being willing but the flesh is weak – to borrow a phrase usually used in other contexts.

In terms of my health there is very little different to comment on. I have a pain in my right shoulder area again. I think this is not unusual with HepC as there are nerves connecting the liver and this area, I understand. I know from a seminar I went to with John Tindall last year that it is a commonly reported issue. It isn’t so bad that I will take anything for it.

My hair continues to fall out and is looking thin – with glimpses of scalp showing through. It should grow back in, I’m told. I am also told that it could grow back in curly and grey. Well, not much change there then. But I would appreciate having it grow back.

And, once again, I have had difficulty working out what Week of treatment I am in. I have just given myself injection #15, if I count the sites around my body – so I calculate I am starting Week 14. By the way, the blotches I encountered on the injeciton sites at the beginning of treatment seemed to have stopped developing as the weeks have gone by – occasionally a red area comes up by the end of that week and disappears in a few days.

Another example of the “brain fog” side-effect – while I was planning the site for my injection Carol commented I was aiming for the wrong side of my leg. I had remembered Mynurse instructing me to do the injections on one side of an imaginary line going down the centre of my leg. I was spotting the fleshy part of my inner thigh as a good target area when Carol pointed out this is where the femoral artery runs from the groin to the knee – exactly the wrong area to select! I should be using the outer side of my thigh. I had forgot half of Mynurse’s instructions!

It makes me appreciate how fortunate I am to have a carer watching over me to prevent potential difficulties like that. It also makes me appreciate how hard it must be for those on this treatment living on their own who could be forgetting all kinds of things to do with their treatment.

I have found out the results of my Week 12 blood tests if – there is no virus detectable in my blood!! (from the HCV PCR quantitative and qualitative test – as no virus was there to test, a viral load test was not done)

This is great news and really makes me feel there is every chance I will go on to completely eradicate the virus! My genotype is the most resistant to treatment(genotype 1A) and my age is a factor (younger people tend to do better on treatment) but nonetheless I am a ‘responder’ to the treatment.

Now, it’s “just” 36 weeks (well, 35 more injections) to make sure – and the 3 month and 6 month post treatment tests (showing no virus detectable) to go! And it all feels “do-able” now! (I am writing this down so that I can refer back to it in future – if I have one of those days when I can’t quite remember it is possible to eradicate this virus!!)

A few weeks ago, I referred to booking a break in Spain. The time came last week and we were off. I had planned to continue my blogging while I was away – but a complete break from everything was too tempting.

So this is to say I am now back – and blogging! Although it was cold for Spain, we enjoyed mid-days sitting in the sunshine. Apart from the last two nights when I didn’t sleep as long as I would have liked, I feel rested and relaxed. And it was good to catch up with friends and relatives in Spain and hear their news.

I think I even took a bit of a break from being “on treatment” – yes, I took my meds, of course, but didn’t spend much time thinking or talking about my various symptoms and side-effects, as there was so much else to focus on. I felt like I had joined the rest of ‘ordinary life’ for a bit and this was enjoyable.

On a practical note about travelling while on treatment, airline regulations require passengers to declare they are travelling with medications such as injections. They also require a letter from the doctor stating you need to take the medications you are carrying. It is necessary (with the airline I flew with) to let their staff know when you check in and have the doctor’s letter ready.

Because Pegasys needs to be stored at a cool temperature I took it in a cool bag in my hand luggage (where temperature and air pressure are controlled). I also took the medications leaflets for Pegasys & Copegus with me – in case of medical emergency so full information about my meds would be available. Needless to say, I also took a yellow sharps box with me. I also took a ’spare’ injection of Pegasys with me in case something went wrong (I remember the time I couldn’t get rid of a large air bubble in the meds syringe) and extra Copegus.

I was apprehensive how this would work on the day – would security pick up the needle while x-raying my hand luggage etc. However it was no problem in the event, travelling both to and from London. Only thing I can add is to advise others who are travelling during treatment to check with their airline about their requirements when tickets are booked.