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giorgissimo
Transplant recipient (March 2014) after relapsing with acute lymphoblastic leukaemia (original diagnosis October 2005) in October 2013. Building strength and blogging at betterfools.wordpress.com – once described as an "expert patient"...
Comments
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Peter – that sounds fabulous, and is definitely something I'll mention to my transplant unit. I've often thought that all the transplant patients would benefit hugely from having an opportunity to meet and talk to each other (that's something I've really appreciated with Anthony Nolan events), but there doesn't seem to be…
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Best of luck, Steve!
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Oh, and things are generally going pretty well, Steve, although I've currently got parainfuenza 3, which is annoying but not too concerning (according to the doctors). I came off the ciclosporin a couple of weeks ago, with no negative consequences, and am enjoying the easing of restrictions! George
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Thank you, both. My team is very open to suggestions, so I'll probably just start the discussions and see how they feel about working out something a little more dependable. It's always interesting to read / hear about how things are done differently in different hospitals – I've always been impressed by and grateful for…
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Sorry to hear about your fever and admission, Peter. I've got parainfluenza 3 now – symptom-wise it's mostly a heavy cough, but temperature and breathing have been fine, so doctors aren't too worried at the moment. The registrar did say that this flu would have been far more too dangerous to me than the influenza B had I…
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Great to meet you both!
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Hi AMB, I'm not sure there's much I can add that the others haven't already covered, but I wanted to reply as although I've had ALL rather than AML, I had a similar situation. when I was first diagnosed (2005), an unrelated donor was found, but my doctors decided a transplant wasn't the best option at the time and I had…
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My wife was hoping I'd develop a liking for tinned tuna, which I've never been able to stand but she loves. It doesn't seem to have happened, though – but I tell her it just means she can have it all to herself... I've gone off omelettes and pork pies; the former may be because I have a terrible memory of a hospital…
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I had a virus – Influenza B (ie flu) – diagnosed in the days after my transplant, and now I'm on Day +78 and only recently seem to have shaken it off. They gave me Tamiflu at the time; then another course of it a couple of weeks later when it was clear it hadn't done much. I asked at the time how I was ever going to get…
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I can't say I've ever been in a situation where I've been particularly exposed to chemicals / petrol / etc, but my wife reckons the two times my leukaemia emerged may have been linked to stress. The first time, symptoms started appearing as I was finishing my Finals at uni (though I only realised this later when…
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There are a few times I've not been able to find a word I was looking for, but don't tell my boss as I'm a sub-editor and finding the right words is meant to be my forte! I've usually put it down to fatigue rather than anything more permanent, but like you I think I had such moments before getting ill, anyway – although…
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Steve – never thanked you for your kind welcome at the time... Better late than never – thank you! Am on Day +78 and all going relatively well; had started to wean off ciclosporin but mild GvHD emerged (which is what the docs were hoping for, in order to get the GvL possibility) so the dose has gone back up again. Getting…
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I've been generally pretty lucky, too (though it's sounding as though a positive experience may actually be the norm, at least among forum-ites here), although it's been a bit less clear-cut as time has gone by... Last night a healthcare assistant came in and said she recognised me (I recognised her, too) from my inpatient…
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Hi Amy – glad you enjoyed the post! I've always found that music's been great when in hospital, particularly when you just feel too tired to do anything more active. I'm always looking for great new music, both for closing your eyes and drifting off (The National is my favourite right now) and for getting you out of bed…
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Fabulous news – huge congratulations! I'm just Day +31 so far, but it's inspiring to read about your massive milestone, even if I'm aiming for shorter-term targets right now...
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On doctor's orders, I ate A LOT before my transplant, in the expectation of losing the weight again pretty quickly, but am now on Day +31 and am not far below my admission weight! I suppose it's a good thing that I've been managing to eat, despite not having much appetite and having not been able to taste much due to a…