My thoughts lately... (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

My thoughts lately...

After having another bad night’s sleeping last night (or not as the case maybe!) I thought I may as well stay up tonight and tell you how things are going.


Not that ‘staying up’ tonight is going to take much doing because I’ve been asleep half of the day! But last night, and probably tonight, I was awake ‘till the early hours thinking about this and that, I was feeling some discomfort from my abdomen. This feels more like pain in those small hours when you have nothing else to think about other than your own worry. Then I finally dropped off at about 4.30 / 5.00am as I can hear all the birds outside my bedroom window chirping their morning chorus and telling me that it will soon be time to get up!

I woke with a start at 6.45 as Matthew, my little boy, climbed into bed for a cuddle which was slightly later than usual. Mandy had already got up and gone out with the dog, I never heard her go and now Matthew wanted her warm space in the bed. After his usual shuffling about I started to doze again nicely until I thought ‘oh cr*p, I’ve got to get up, get showered and get on the road to St Jimmy’s for Friday morning clinic’. I laid there for a moment cursing and contemplating another half hours sleep because I felt so damn tired, but realised as I could feel Matthew shuffling around that it was time to get up. I knew I needed to leave no later than about 7.15 if I was to get their by 9.00’ish, and that’s with no hold ups, which there invariably is going into Leeds at rush hour.

I was on the road by 7.30, not bad for me to shower, get dressed, take my usual massive amount of tablets, grab a mouthful of breakfast and get in the car. Taking the tablets is hard enough but I’ve been changed from Prograf Tacrolemus to Neoral Cyclosporin, ever tried those? Taking ‘Tac’ was easy as they were small, the first time I saw 100mg Cyclosporin I thought it was a suppository, there huge! Anyway, I was on the road and heading to St Jimmy’s more or less on time, which was good considering these days I ‘haven’t got a rush in me’, you know the saying...

It was whilst I was on the way that I thought about what I’d say to the doctors when they asked me how I’d been. This was to be the first they’d seen me since my ‘release’ from hospital two weeks ago. Well, it was fair to say that I‘ve been feeling cr*ppy since I came out, but how exactly? It dawned on me that I seem to feel more like I’m living with the effects of Hep C now than when I was first diagnosed! Fatigue, insomnia, pain in the abdomen, needing to take naps all the time; all the other usual stuff but without that ‘yellowy’ colour. I know I have a brand new liver but I seem to feel worse now than I ever did.

When I eventually got through rush hour traffic and arrived (late) at the hospital, I told all of this to the doctor in clinic and he said that “You’ve just had a major operation and then another procedure because of the complication of a bile leak and that amounts to nearly 6 weeks in hospital – you were also quite anaemic when you were discharged and you’ve lost a lot of weight – It’s going to take time.” When you put it like that, okay, okay, I suppose I’m allowed to feel a bit cr*ppy! Consequently, when I got home just after midday, I felt devoid of energy and had a banging headache and so went straight back to bed. I slept the rest of the day and so I’m awake now tapping away just like the old days before my transplant!

The thing is, up until I ‘bled’ all over the place and was subsequently diagnosed with Hep C, I never suffered (as far as I remember) with any of the usual symptoms and never used to get ill. I never had any pain like I have now. A good thing you’d think, except it’s really hurting me now. The truth was that I was always on the go, working flat out and playing just as hard. I don’t think I had hardly any time off sick in 15 years or so, and if I didn’t start work early it was usually because I had a hangover from ‘working’ so hard in the pubs the night before! Of course then I would feel my liver ‘grumbling’ with disapproval then but that was to be expected, right, Hep C or not?

I think that’s why I feel it’s hitting me so hard now, trying to get going this time seems so much harder. Even when I was first discharged after having my transplant I seemed to have so much more ‘go’ about me. In truth I’m probably feeling the after-effects of the operations rather than the symptoms of Hep C Not to mention the ‘cold turkey’ of kicking the habit of all the ‘opiate’ painkillers I had been on for many, many weeks. Opiates were always a favourite of mine and probably got me into this trouble in the first place. The truth is, even second time around, I never passed up on an opportunity to go without the tramadol or dehydracodeine. Now I recognise that ‘icy’ wind blowing through me and aching ‘flu’ like symptoms of not having them to rely on any more. Not nearly so bad as last time but a poignant reminder of how my life was many years past and the misery of it all!

The other thing is that I’ve been off work now for getting on a year now and I need to think about getting back to it. Problem is, back to what? I can’t go back into the licensed trade, nor would I want to. Cooking with all those sharp knives and my infectious blood doesn’t seem a very good idea either but money is now getting tight, so what do I do? I try not to dwell on that too much, it only makes you worry. Still, when I was a kid I used to back-pack around Europe with no more than a ‘tenner’ in my pocket, no sign of a job but never batted an eyelid. It so much more prominent a worry now when you have others to consider like Mandy, the kids, house, car & that sort of stuff. But I’ve always been resourceful and usually land on my feet somehow – but I do work hard given the chance so I hope I’ll be OK. Just got to get myself through this first – and I will!

Well, the birds are twittering again now outside my window so I’ll probably call it a night. The weather is supposed to be quite good tomorrow so I’ll see if I can rake myself out of my pit in the morning. I said I would take the kids for a small bike ride, which is about all I can manage at the moment, never mind those two with their boundless energy. Emily is 5 and just coming off ‘stabilisers’ on her bike so best get band-aid ready.

Well, there it is; my thoughts lately. I can’t wait to start enjoying life fully again, like I always did, instead of just snippets in between the fatigue and the discomfort of now. But it’ll come I’m sure.

Take care everybody.... Ian

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