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


Recent visitors

Im 20 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.
30th Nov 2006, 21:52  

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nige says:

birthday bigups to you, man. enjoy being a teeny for just this one last night...tomorrow you'll be a BIG BOY!

30th Nov 2006, 22:08

hildegard says:

Blimmin' eck! Some list. You've had a right old time of it...
All the very best for tomorrow - sounds like you're turning your back on your GvHD as well as your teens, so double woos & yays from this direction. :D

30th Nov 2006, 22:13

MaggieD says:

Alex has always been a Big Boy! ... Big in spirit ... Big in Music .... well, just big all round ...

30th Nov 2006, 22:16

Dhamaka says:

you're getting old, Alex... ;-)

that sounds incredible - and you're still blogging and smiling - wtg!

Looking forward to the Christmas-at-home blog and wishing you strength to get back as fast as possible

30th Nov 2006, 22:17

paintist says:

happy birthday for tomorrow, all the best wishes for the 20s....and xmas at home sounds like a pretty good goal to me...

30th Nov 2006, 22:34

Puddlepuff says:

I hope you'll get the birthday present I asked for you, I hope you'll get it, I know you deserve it!! I just can't give it to you,.... so if the miracle cells can read this,.. please take care of it.

I had my 29th birthday today,... and I still have the feeling I'm in my teens.

Happy Birthday Alex, I hope it will be a nice day tomorrow as much as possible.

30th Nov 2006, 22:35

Geodyne says:

Happy birthday for tomorrow, Alex! You're right, in that making it to another birthday is always something worth celebrating - for any of us.

Get well, make it home for Christmas. I love that smile.

30th Nov 2006, 22:35

540air says:

Happy Birthday for tomorrow Alex!!

My mum has a tradition (which she still keeps up now), of asking how old you are the night before your birthday. It's because it's the last time you'll be that age before opening the door to the next number.

So, how old are you? Enjoy it, because tomorrow another adventure begins :)

And like Geo says, get well and make it home for Christmas!! :)

30th Nov 2006, 22:59

silar31 says:

Dude, that all just sucks. I'll be sending all my good thoughts in your direction to make it home for Christmas - and to get to stay there. I had more than one episode in hospital where I made it home on the 23rd and was back in on the 26th - but I never actually had to be in for Christmas, so I got lucky. Keep up your determination and you'll get there! Happy Birthday!

30th Nov 2006, 23:19

Yopi says:

Happy birthday Alex!

All of this seem fucked up for just one person not even 20! (well... :) It's nice you share it so people know life is not just about welfare. It is a gift already and then that's what you make with it. SImply live? I don't think it's enough.

Pull yourself out for X-Mas man, your mind can impact so much the therapy and this is just about the right attitude you're having boy. No doubts you'll make it!

All the best pal!

30th Nov 2006, 23:50

Gael says:

Happy Birthday, Alex!
Hope today is a good day Cute 'tache, makes you look very grown up : )

1st Dec 2006, 07:54

Dhamaka says:

... and tomorrow's today...

Many Happy Returns

xx

1st Dec 2006, 08:06

MaggieD says:

Hi,Birthday Boy!
Many Happy Returns from me too ...

1st Dec 2006, 08:48

HAPPY BIRTHDAY ALEX!!!!!

keep it up man, i'm always humbled by reading your blog - you're an inspiring person, alex.
Good luck with the physio, and i'm rooting for you to get home for chrimbo...

1st Dec 2006, 08:52

mrs540NLI says:

HAPPY BIRTHDAY ALEX :-)

1st Dec 2006, 10:37

seaneeboy says:

Many happy returns Alex - Hope your 20s are much better than your teens!!

1st Dec 2006, 10:53

Chris says:

Happy birthday! We'll throw some sort of got well/birthday/christmas party for you when you get out. Hang in there with the physiotherapy (and everything else).
Much love
Chris

1st Dec 2006, 11:09

Happy birthday mate!

1st Dec 2006, 11:14

dude you keep your eye on that goal of christmass i wish you well to do it, you go for it fella!
20 go you! ive just turned 23 and still act like im 18, age is nothing its the spirit you have! you seem to have a lot of spirit keep it up, were all sending good thoughts!
oh and happy birthday! wooooooo

1st Dec 2006, 12:28

factotum says:

Happy birthday Alex!!!!

1st Dec 2006, 12:36

wow - on your birthday, a chocolate filled advent calendar starts!!!

happy birthday trooper!

1st Dec 2006, 12:43

Joe G says:

Happy 20th Birthday, Alex, and wishing you many, many happier birthdays in the decades ahead. Good luck with your Christmas date with home - I bet you'll make it, walking unaided into the house!

1st Dec 2006, 14:24

OJ says:

Happy Birthday and I'm loving the smile that you've pulled out of the bag there. Keep smiling and keep up the great powers of description.

1st Dec 2006, 16:44

Joan says:

Happy Birthday !!! ALEX! Enjoy your cake , but bumps , i don't think so, maybe next year.
PS: we have read some really good stuff about those chymal stem cells. wish you lots of luck for making it home for Christmas , well someone has got to cook the Christmas dinner!!!!

1st Dec 2006, 17:37

happy birthday dude, keep on rockin!

2nd Dec 2006, 14:21

colin(colinsplace-at-hotmail-dot-com) says:

I found this blog by accident

Im glad I did ,its the blog of one

of the bravest men that ever

lived ,and you made me smile ..

Alex .love to your friends and

family ..

21st Sep 2010, 22:00

Factotum says:

Colin, I'm happy that you came across this blog. It means a lot to the whole Moblog community.

22nd Sep 2010, 02:10

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