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

(viewed 1149 times)
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..... Tomorro
30th Nov 2006, 21:47   comments (2)

My birthday tomorrow

(viewed 928 times)
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, 21:36   comments (2)

My birthday tomorrow

(viewed 1885 times)
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   comments (2)

Marmite.... For yourhermione

(viewed 945 times)
yourhermione noone will be able to tell you what marmite tastes like,
marmite is marmite?!? Its yeast extract (but dont think its anything
like yeast? I know what yeast smells like from school science lessons,
not like marmite)Marmite is the extract they scrape from the bottom of big beer brewing
cannisters (well thats what i heard anyway?) its yummy.
Best eaten with toast. You first spread on butter (or margerine) then a
thin layer of marmite (or loads, if you love it)Another thing i love is the famous "marmite cheese on toast"
You spread marmite on bread, then slice mature cheddar onto it, pop it
under the grill like you would any cheese on toast and hey presto.
Marmite cheese on toast.When im out of here ill blog the english marmite, which is much runnier
than this weird new zealand stuff (and i reckon nicer)
though il keep my mind open till i get home and really try this New
Zealand stuff properly.
(Alex, the New Zealand nurse prefers the New Zealand one)
30th Nov 2006, 21:35   comments (2)

Ergh ergh ergh yankauer

(viewed 1067 times)
This is the "yankauer" that i use with the physios to get the big chunks
of crap out of my lungs. Proper nasty.First i use "the bird" not quite sure why its named that? I guess it
looks a bit flamingo like? (Only green)
Basically you suck in on "the bird" then i fires air into your lungs,
lots of positive pressure., so it kinda takes a big big breath for you,
then u breath out. You do this about 4 times. Then your meant to cough
and cough and cough. Then you stick the yankauer into the back of you
throat, and it sucks all the crap out that your managing to cough...
Which to start with was hardly anything, and when there was something i
could bring up it was bright bright green (like some slime from ghost
busters!! Or the exocist) hehe yuckNice. But today i feel there is a marked improvement!
I duno if you can see the green crap in the yankuer (actually too sticky
that it i can't be flushed thro.)
25th Nov 2006, 10:57   comments (12)

Hi everyone!

(viewed 1185 times)
Look what ive got!?!On the left we have New Zealand marmite ( which can i say is completely
different to UK marmite.
I wouldn't say it tastes any different, but the NZ version is much less
runny ( so i think maybe much easier to spread without the mess.
When i fianlly get out of the hell hole that is hospital i will give a
full review.Test one will be standard (melted butter on toast, covered in marmite.
But the ultimate test is marmite cheese on toast.Anyway, we'll see.Another nurse went to switzerland, n got
Me a cow bell! How sweet is that? I suddenly feel greatly enpoweredTo other matters. Doctors think that the gvh has probably been
stablised, its now a matter of healing the damage its has cause.No idea about the magic stem cells yet? Finger crossed. Any signs of
magic il blog it quick.
Im in load and loads of pain at the mo, my ankles and wrists and elbows
are swollen
So im on loads of painkillers.... And pretty spaced out. This blog entry
has taken forever..
23rd Nov 2006, 20:10   comments (12)

Pedals

(viewed 1315 times)
Coz iv been bedridden for weeks now my legs r just sooooo weak.
I got my mum to get me some pedals to use at the end of the bed. Quite
good actually :)Today is a big day.
Im having some mesachymll stem cells (spelt wrong?)These have been used about 170 times ever in the whole world!!
They r the stem cells left over after bone marrow donors give bone
marrow harvists for transplants!When they have been put into the body, sometimes they hav should that
they just go around healing tissue? How weird?
They dont even need a tissue match?!?They have should that they can be very halpful after GVHD (and other
such times like after heart attacks)So its a big day for me, and science..................... On a bad note, i had a really horrible event last
night. I suddenly started findin it hard to breath. There was some
trapped gunk in my left lung i think, i started to panic. They were
going to send me to HDU (high dependency unit)
But i managed to get out of that, they gave me some oxygen and did these
magic blood tests that involve big metal needles that they stick into
your artery (yes artery) to test your blood glass levels.yeah my gas levels were low and my haemoglobin was about 7.6. Man i felt
sick. So iv been on oxygen all night, but im feeling alot better.So yeah im in the wars a bit....Il blog later.
20th Nov 2006, 11:39   comments (12)

Proof

(viewed 1148 times)
Here is a piece. Now isn't that truelly horrible?
15th Nov 2006, 21:30   comments (13)