Lead consultant, Amit Khot, confirmed at yesterday’s meeting that the bowel biopsy clearly showed I have GVHD (Graft vs Host Disease) of the lower bowel (and gut potentially). Basically my brother’s immune system which has grafted well is now attacking my ‘foreign’ body! This occurs in a number of leukaemia patients especially when the immuno-suppression drugs are reduced (cyclosporin in my case).
Although my clinical presentation is not entirely consistent with GVHD the tests did not show any sign of bacterial infection and Amit is confident with the pathology report on the bowel biopsies and has put me back on Prednisolone (steroids) which basically kill off the T Cells in my blood which are attacking my gut and bowel.
He has prescribed a low dose to start with (40mg/day) hoping this will return my gut to normal (meaning no abdominal pain and diarrhoea) in a matter of 4-5 days after which I can start the weaning process of 10 mg per week. It will take me a month to finish up on the steroids.
When I was previously prescribed Prednisolone (for the GVHD of my liver) I started on 150mg per day. The hope (and professional judgement) of Amit is that the CMV (cyclomeglavirus) will not get out of control this time. This is the juggling act and it is difficult to predict what might happen.
All I can do it take it one day at a time, and one blood test at a time and see what happens.
In the meantime Jan and Claire are now back home safely which is fantastic. My mother certainly did a fantastic job caring for me but it is just nice to have Jan home again. Unfortunately Jan has a travel cold which is making things a little difficult in confined spaces as it is certainly something I do not want to contract.
Lachy and Dougall stayed on in the US and are now doing a bike ride in the Utah desert. Half their luck! Good brotherly bonding.