[Heather8773]

Mustafa I'm sorry about what happened to your brother. I hope that you and your family are doing as well as y'all can after his passing.
Unfortunately Paul passed on June, 3 2013. I've attached below Sandi's message from June 4, 2013

Originally Posted by MDSPerth

I know there are so many positive stories out there on the forum and I so wish with all my heart that was to have been the case for Paul.

But with deep sadness I advise that my beautiful brave Paul, loved by so many passed away on day +60, the 3rd of June.

Paul was the recipient of very very cruel GVHD of the skin (grade 4) and was readmitted to hospital on day +23. He battled so hard and his skin recovered remarkably well in a lot of areas. He even fought off the MRSA bacteria during this time. This did leave him very weak and he lost 13kgs which he could ill afford to do.

Over the weekend he was allowed home visits for three hour each afternoon. The first afternoon we had coffee at some friends for old time sake as they were about to relocate. On Sunday despite the fact that he was extremely tired I bought him home which after 5 weeks of hospitalisation he was very excited about. He could only summon up the energy to sit on the couch and then headed off to bed to have a rest before heading back to the hospital. When he got up he went to he bathroom and then collapsed on the bathroom floor.

I had to phone an ambulance. In hospital he fought like crazy, but his body was just fast shutting down.

His consultant phoned me this morning to arrange to see me. He was at that stage totally bewildered because the speed of Paul's demise is quite uncommon. All his blood tests in the morning were good including his infection markers. Blood samples have been sent to microbiology to see if there was some undetected micro organisim that could have caused this tragedy. But even if they find something it will not change this dreadful outcome.

The nurses on the BMTU loved Paul, and were always telling me what a gentleman and a model patient he was. Everyone who knew my darling Paul loved him and he will just be so sadly missed. Paul had a blog and in the last two days he has had over 2,200 hits.

He took a high risk going to transplant, trying to buy us some extra time on his 62 years - unfortunately for all of us he was not one of the lucky ones. The world will be a much sadder place for us with him gone.

Good luck to everyone of you transplant recipients out there and good luck to all you folk with MDS that just have to live with this insidious illness.