neutropenic Alex's online moblog

by neutropenicalex

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Hello friends. This is My "moblog". I will try to update it everyday, from my lovely hospital bed.
keep updated :) and feel free to e-mail me at aj_saville@nerdshack.com. I will email you back
xxxxx


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My birthday tomorrow

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This is my last night as a teenager.... Weird...
Still in Hospital with the thinnest most wasted away legs in the world.Man its hard.
Basically i had GVHD (graft-verus host disease) pretty damn bad....
This means that the top up of stem cells from my donor attacked my skin,
bowel and liver (usually it only happens to one or 2?
My consultant says that on a scale of about 1-4 i got about 4 on the
bowel, 4 on liver and 2 on the skin.
Pretty bad i'll say.
Because of this i was first put on steroids (to suppress the attack)
Then Campath (a man made cell that suppresses your immune system alot) i
had it before my original transplant.
Then they put me on cyclosporin. I had this before my original
transplant too, its another immuno-suppressant....
Then as you know i was given mesyn-chymal stem cells (spelt wrong im
sure) which are stem cells that are left over after bone marrow donors
given cells. I have no idea how they work, but they heal cells
apparently? And seem to work with people suffering from GVHD and
apparently people who have had cardiac arrests.
The dermatology consultant told me today im the 5th person in the UK to
have them. Which sounds pretty cool to me.
They haven't kicked in yet but we'll see? Maybe they won't? Hope they do
though.Things are getting better i guess, still in a pain at times, still on
morphine, but a lower dose by far!
I have a blocked left ear thats giving me headaches. Still have diarehea
(dam this word?!? I can spell it!!!!) , but that will get better.
Still have jaundice, but its getting better and better. I have nice
yellow eyes, less yellow than before though.
Skin is flakey, but alot better than before. And the feet still have
their kneels on hehehe..... Man i cant believe i peeled basically my
whole feet off like socks. Weird.......My legs are like twigs!!!! No muscle at all. The physio comes each day
to teach me to walk again.
I can shuffle around the room with a zimmer fame, but very very slowly
and painfully. I have to lock my knees to do it.
Going from sitting to standing is the hardest thing though, i have to
swing my whole body up, and yell out in pain as the physio gives me a
lift from the hips to help. Its going to be so hard to get completely
mobile and out here for xmas but i'm determine to do it.....There you go. Thats the update!!!!
And its my birthday tomorrow :) hehe
I had my 19th birthday in hospital too.
Couldn't really care that im in here for my birthday, im just happy to
be alive.
But christmas is something different! I really really want want to be
home for christmas..... I decided i have to. So im going to.Happy birthday to me. The big 20..... Tomorrow.
Alex saville
30th Nov 2006, 21:35  

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Mouse says:

Shite man, and I winge when I have a headache. Keep on fighting and happy birthday for tomorrow

30th Nov 2006, 22:43

yatesybear says:

Happy Birthday Alex, sorry if its late, i dont get on the computer much. Good luck with everything, i send you good vibes and love. I really hope you get well soon, you're very brave

11th Dec 2006, 00:59

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