Friday, 25 March 2011
Okay, so let me tell ya what's been happening of late. I guess it's about time I did as I haven't exactly been a chatterbox recently have I? So I suppose it's about time I put pen to paper so to speak. Truth is, I seem to find it a lot harder to write these days. I don't concentrate as well as I used to and I never was that hot at it even before all this happened - even on my school reports it used to say 'easily distracted, could do better' etc etc. And I find communicating in general a lot more difficult, anyway I'm drifting off the point (and that's something else that was frequently written on my school report!) so let me tell you about whats been going on, 'HepC wise', since I last posted.
A couple of weeks ago, out of the blue, I got a call from one of my doctors at St Jimmy's saying following a discussion by the panel(?); I had been approved to be put forward for Hepatitis C treatment!
Wow, where did that come from? It's true that last month, following my biopsy, that I had asked to be considered for the treatment, but had been told that it would not be considered yet as my doctors were "still trying to protect the graft", it being only a year since my liver transplant and all. They also said that there is a chance that the HepC treatment drugs, being fairly bloody powerful, could react badly with my immunosuppressant drugs and that I could end up rejecting my new liver!
They have been 'messing around' with my immunosuppressant drugs a bit recently, changing me from Neoral Cyclosporin to Rappamune Sirolimus. Not that it worked; my mouth suddenly became a hot bed of ulcers and burned constantly. My tongue swelled up and I was unable to taste anything and inside my mouth became sore and highly sensitive. After a few days I emailed my doc and he rang me back to tell me to stop taking it, revert back to Cyclosporin and that the mouth ulcers were a common side effect of that particular drug. I spent the next week and a half in bed feeling very weak and fevered, waiting for the Sirolimus to work its way out my system. As my doc said, "immunosuppressant drugs are extremely powerful and Sirolimus has a very long 'half life' and it will take time to get rid of it". Great! Looking on the bright side I did lose three-quarters of a stone. However, my doc told me that if I could stand taking it without getting the side effects, the it was the immunosuppressant drug of choice for post liver transplant HepC patients - Clearly, I couldn't stand it!
They had tried the change of drugs as I had been complaining about headaches, especially if I had been pushing or over- exerting myself or I had just gotten over tired and as anybody with HepC knows, fatigue is a major factor of the virus.
Now when I say headaches I mean bloody bad awful headaches, that would leave me locked in a darkened room for two or three days at a time, unable to stand light, loud noise, barely eat and could just about keep myself hydrated by drinking water only. I had been changed from Tacrolimus originally because of these migraine type headaches and they certainly seemed to be less frequent on Cyclosporin but I still got them nevertheless. It looks like for now though, I'm just gonna have to put up with them. It reminds me of the Tommy Cooper joke "Doctor, it hurts when I lift up my arm like this, so the Doctor said 'Don't lift up your arm then'!"
So after emerging from my bedroom with mouth ulcers and headaches in abeyance, I get the phone call from my Doc saying they are putting me forward for HepC treatment, which is good news, even though I face this news with trepidation.
Why trepidation? Well, treatment for HepC is hard work. For a geno 1(a) such as myself (the hardest of all hepatitis C genotypes to get rid of) treatment is generally 48 weeks and can be as long as 72 weeks. The side effects can be bloody awful (I'll post details about it here next post). But probably the hardest of all is that there is no guarantee that it will be successful; at best 50/50 chance of clearing it and following a Liver Transplant, chance of success is down to about 30%.
Not great odds I'm sure you'd agree but what the hell! The thing is, because of the immunosuppressant drugs I take, the HepC virus has a free hand at knackering my new liver so I guess doing everything I can to get rid of it is in my best interest. And if I can't get rid of it, at least I'm gonna give it a good kick in the balls!
My other thought is this, I can feel how the virus is creeping back into my life, day by day, week by week. I can't tell you how much it has affected me as a person. Going back to Tommy Cooper, he used to use a line "I'm a shadow of my former self", talking about how he'd been dieting. The audience would howl with laughter as there was no obvious change to the way he looked and he would stand there with his characteristic 'hapless' look with just the hint of a smile on his face. I feel as though that joke applies very much to me now. Outwardly, it would be difficult to spot that there is anything wrong with me but I am not the confident, 'glass half full' kind of bloke I once was and for me, this is harder to come to terms with than the side effects of any of the drugs I take now or that I face. Above all else, I feel that this change in my being, like the the virus itself, is killing me and that the odds of beating it are low and the challenge ahead is insurmountable. One thing is for sure - now the fighting really begins!
take care everyone... Ian