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Hello all, new member here, transplant 16 months ago...

The transplant all went hunky dory - 100% chimerism from a sibling donor, but I've had ongoing aggro with various incarnations of GVHD and CMV reactivating and I've been in and out of hospital ever since. One of the site admins suggested I join after stubling across my blog and thinking maybe I could share some of my experiences which I am more than happy to do. It's at crud4blud@blogspot. Having read this sites T&Cs and rules re 'language' and 'opinion'- I'd advise that's it's a very frank view of what has been going on with me and liberally sprinkled with anglo-saxon terminology, so if you are the type of person who is offended by such stuff then maybe best avoided. Cheers Nick

Answers

  • Hi Nick, great to see you on the forum...hopefully sharing your blog will help others and you can find support here too. I'm definitely heading over to have a look!
  • Hi Nick,

    I've just started reading your blog, in particular the one about photophoresis you wrote yesterday (5th June) which is interesting as I'm also having the same treatment for skin GvHD in Nottingham using the same machine. I usually have it on a single needle set up so the blood is taken and passed back through the same needle. I believe this is slower than double needle but I prefer it as it means I don't have both hands tied up for the duration.

    I've had a quick look through the rest of your blog and have bookmarked it to return and read at more leisure. (I don't mind the Anglo-Saxon terminology and am prone to using it myself when not on here)

    Keep blogging and put stuff on here and all the best,

    Steve
  • Hi Steve - I tend to just veg out and sleep for the couple of hours that it takes. i did have the misfortune once to end up being put on one of the old V1.0 machines with the amber/black monitors which took 5 hours! Failing a major malfunction with the m/c things work put pretty well for me to drop my son at school, grab a train to London, have the PP and then make it back just in time to collect him. It does mean downing loads of water pre-day 1 and going for the 14g green needles in each arm, but I've had it down to 1h 50mins a couple of times. Nick
  • Hi Nick,

    I haven't had the misfortune to end up on one of the older machines yet, though they do have them in Nottingham, so I'm hoping I can avoid that. One of the new machines had a malfunction the other week though just after another patient had started treatment. The centrifuge bowl came loose in it's mounting and smashed all over the chamber it sits within. Made a **** of a racket and a horrible mess with blood everywhere. I hope it never happens to me!

    It's interesting what you say about keeping your fluids up the day before. It's not something that was mentioned to me and I don't do anything out of the ordinary. In fact the thought of being plumbed in to the machine for a couple of hours without being able to go for a pee makes me perhaps a little cautious the other way. It doesn't seem to have affected me. The machines have a bag of saline I believe so that your fluid balance can be maintained during treatment?

    I'm not sure what size needles they use on me but they're reminiscent of the darning needles I remember my granny using to darn socks when I was a kid - huge! I seem to have good veins on the inside of my elbows and the nurses always praise me for that.
  • Didn't know about the bag of saline - maybe the pre-hydration is to keep the veins pumped up and accessible then...
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