Wednesday, 7 January 2009

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...


Marty Zelei said...

Rachel, I have been reading your blog since july 08. I found your site after my husband had his lung transplant. I know that you have been through so very much in your life, and maybe sometimes you feel like people's words aren't so encouraging so much anymore, but i really do want you to know that I have gained so much strength from your words and feelings. You are in our thoughts and prayers daily. Believe me, if we could get you to the US we would.

Gail said...

Hi Rachael:
Hope you can surmount your current issues and get the medical help/transplant you need. You are an amazingly strong young person and endure more in a few weeks than some do in a lifetime.
Keep on keeping on! Wishing you all the best in 2009.

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