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I haven't posted recently mainly ...

Posted Jan 22 2009 6:55pm
I haven't posted recently mainly because there isn't much to post about! We had a quiet new year, enjoyed everyone else's fireworks and was in bed for just after midnight. Not exactly a thrilling night, caught dad snoring in the chair at one point...
On a health side of things my lungs have been a bit up and down. Over the past few days I've become more aware I'm out of breath. I don't think I am more out of breath than usual but I'm just more aware of it, I have been taking my maximum dose of Diazapam. Maybe I shouldn't be doing but I didn't get to talk to anyone yesterday at day hospice, my advanced nurse practitioner (community nurse) is off on leave and my consultant won't have the foggiest so I thought I'd see to myself. I'm quite used to being left to my own devices, up until summer last year I was very unsupported in the community, I didn't have any sort of community nurse, my consultant got me an appointment when I needed to see him and I wasn't attending the hospice. I'll possibly run it by my GP after the weekend if things are still the same but I doubt she'll be able to help out much either.
Otherwise recently I have been more tired than usual and my eyes have gone very dark. I have bloods on Friday to check my iron levels and haemoglobin I suspect as my appetite isn't so good at the moment they're the cause. My iron stores have been low for as long as I can remember, when I was 17 my B12 levels were found to be low too, I thought nothing of the pins and needles in my hands and fingers and when I was diagnosed with Pernicious Anaemia and discovered I'd be on B12 injections every 3mths for the rest of my life I was quite shocked. Low B12 levels and Pernicious Anaemia can cause spinal and brain damage if left untreated, the injections are stupidly painful, the solution is thick like tar, I hate having them but they're just every 3mths now. At the start I was on a build up course, something stupid like one every other day and I actually cried at the thought of having them so often and I don't cry at needles... Usually!

There isn't much news on the transplant front either. I've received an appointment to go for a psychological assessment, something I'm told is procedure when someone is to under go such a big operation then once I've been given the all clear then hopefully one of the hospitals (I'm puzzled as to which) will hopefully crack on with the actual transplant assessment...
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