[MDSPerth]

Tamara,
You have had the courage to come on here and write what I have so been thinking. Paul went into his transplant with the strongest possible match (I understand better than 10/10 - it was an 11/12), but on day +60 was taken suddenly by an infection. Although ultimately it was the infection (Pseudomonas aeruginosa) that took dear Paul, more importantly was the servere GVHD - grade 4 - of the skin, and possibly the gut although not confirmed that was the onset of his demise.

GVHD of the skin is the cruelest thing I have ever witnessed. It was just like witnessing someone received third degree burns, but as it was pointed out to me at least when the burns are coming from a fire the person can be removed from the heat - in the case of GVHD of the skin, the burning is coming from inside and it is very difficult to extinguish the source of the fire.

Whilst on this forum, I have also seen another prominent figure - Cam - who has lost his life during his SCT due to severe GVHD of multiple organs - he too had an excellent match.

The very cruel steroids (methyl prednisone) on top of the cyclosporin they use to supress the immune system even further during the onset of severe GVHD compromises the immune system and the patients are left wide open to opportunistic bugs.

In Pauls instance the onset of his infection was so swift that he would not have seen it coming, so at least he passed away with HOPE of recovery. This however does not help the loved ones he left behind.

I fully understand that a patients prognosis without the transplant are not generally great, but neither are the chances of a full recovery heading into tranplant. Still it seems that so much importance is made of how good the match is.

I wish everyone well heading into transplant, because there are positive stories out there, but please be aware that for every positive story, there is a greater percentage that do not have a positive outcome.

I truely believe at this stage that every stem cell transplant recipient is a medical experiment, and if something can be learnt from every patients outcome then perhaps one day ultimately the success rate will be far greater!

For the rest of my life I will live with the question - should Paul have gone to transplant or should he have made the most of the time he had without a transplant. At the time of transplant he was asymptomatic and living a full life with the help of growth factors (his very efficient bandaid).