I saw my consultant at the hospital last week, and we agreed that I would go ahead with the new triple therapy for Hepatitis C. The consultant recommended Boceprevir over Teleprevir in my case, as I had eczema when I was younger, and she thought I might be high risk of the rash.
I had been very tense and anxious, for a few days before the appointment, I guess because I was nervous about the decision to be made. After the appointment I felt much lighter, knowing I was going to go for it, which makes me think I'm doing at least what I think is best.
I had been very uncertain about whether to go ahead with treatment now or wait for new treatments which don't require Interferon. My liver is in pretty good shape at the moment, level 1 scarring. But... even though it isn't very likely I do hope to be able to try for a baby in a few years time, and would like to try to clear the virus first.
My treatment will start in four to six weeks, depending on when they have space in the clinic. Or maybe a little later, knowing the hospital.
On the Friday after the decision I spent pretty much the whole day on the internet, trying to find out everything I could about triple therapy with Victrelis. I couldn't find many treatment diaries giving first hand experience, just http://48weekshcv.wordpress.com/, which describes the experience of Lynn, who was given Boceprevir during its clinical trial phase.
It was a relief to find http://hcvsupport.org/forum/index.php/board,3.0.html, the HCV support group. I'm very pleased to find somewhere I can ask how big a 'snack' is, when the time comes.
Lynn's blog, and what I found elsewhere on my marathon trawl has convinced me that I need to be determined to stay fit throughout my treatment. My memories of the combined treatment are that I was too tired to do anything, to walk up the hill to the shops, but it seems to me that the fitter you are the better you can bear the treatment, which maybe is why people find that it gets harder and harder as the weeks pass - you feel awful so you rest, then your fitness level drops which compounds your feeling awful.
Thing is I know enough of myself to know that discipline is not my strong point. If I feel rotten I don't go to the gym, on a normal day. So, how to get myself to a place where I go to the gym when I don't want to? Hmm. This is one of the reasons I'm writing this blog, to think out loud, write down why it's important, to try to motivate myself.
Things to do before my treatment starts in 4 weeks time:
- Clarify with the consultant whether I should go to my GP and get a Citalopram prescription, to get started on before my next hospital consultant. Done - I called the hospital today and was lucky enough to speak to my consultant, who said yes go ahead.
- Get a bed for the study, so that I have somewhere to go and toss and turn when I can't sleep, without worrying about waking A up.
- Increase my fitness as much as I can. I'm going to do Bikram yoga until I start the treatment, so that hopefully I can go back to my Viniyoga class once I'm on the treatment and it will feel manageable
- Continue fasting on Wednesdays, and maybe extend it to Thursdays as well, to try to get my immune system running at full steam.
-Think about my diet, and look at iron rich foods I can introduce, to do whatever I can to give my red blood cells a boost.
-Work out a routine for my medication, work and exercise; and work through the pros and cons, maybe using SMART tools and Changing For Good, to drive home through my deepset laziness, that this will make me feel better throughout the treatment in the long run, however lousy it feels at the time.
-Get a Citalopram prescription.
-Have spoken to work.
Is there anything else I need to be doing? It would be good to improve procedures at work now to make it easier to get everything done when I'm ill. I can't think of anything else.
Anyway, if you have stumbled upon this, thank you for listening, and goodnight.
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