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Transplant from my sister in Feb 2013 I had MDS/RCMD - fortunate to achieve 100% chimerism- unfortunate to be fighting with oral GVHD and CMV ever since. Still on red line levels of immunosupressants so getting lots of tasty little bugs from everyday living. Back in Kings College Hosp in London again at the moment w chest infection - however my general demeanour is UP and although things can be a pain in the A**e at times, I know that there are people a lot worse off than me - and also those that didn't make it.


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  • Further to river7 and renates responses above I had a chat with my stem cell donor (my sister) and asked her whether she had a thing for prawn cocktail crisps to see if there;s anything to this inheritance thing,- she told me that **** right she did - bit only when pre-menstrual! So I'm not quite sure where that leaves me.
  • This is one of the things that I thought would be hardest to deal with in my post transplant/recovery years. Prior to my BMT I was an absolute sun worshipper and could never get enough. I expected to feel quite resentful and put upon having to slip slap slop, but to my surprise have turned into a shade hugger - I get…
  • Didn't know about the bag of saline - maybe the pre-hydration is to keep the veins pumped up and accessible then...
  • I'm actually an in patient at Kings College at time of writing (T + 470) having treatment for exactly the same thing, a combination of nebulizers and IV. Have to say the change in just over a week is remarkable, I could barely string six words together without dissolving into a coughing spasm when I arrived - agree with…
  • Steve - I had an interesting discussion with a fellow MDS patient here at Kings. We found a common link of extensive exposure to printing solvents used in the silk screening industry, Cyclohexanone, Cellulose thinners etc. I worked in a silk screen shop for about 5 years in the early nineties and was pretty blase about…
  • For me I think one of, if not the major hurdle that needed to be overcome was the acceptance that things will never be the same as they were before the chemo, transplant or whatever procedure took place. Since this was embedded with me I have been able to calibrate my expectations from life and view setbacks in the context…
  • 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…