Yesterday I had the first photopheresis of the new year

On January 8th, 2018 I had my first photopheresis of the new year. Everything went smoothly, as the nurses in the service know me very well. I always have a very low body temperature (below 36°C), so before starting the “experiment”, I need to have my body warmed up to have more flexible veins and less viscous blood. I start my day there by being placed under a warmed blanket: very convenient during the winter! After this start, no more problems of the machine puting itself in alarm because of problem with pressure and the like! And it makes me sleep too!

Moreover, last time I met with my graft doctor, she lowered the amount of cyclosporine I take twice a day (from 40mg to 30mg), as the signs of GvH had disappaered. But, over the last few days, I had some bad feeling in the mouth, as if the GvH was making its come back. So yesterday, after the photopheresis, I asked to meet a doctor from the day hospital so he or she could tell me if I was right. The young doctor, an intern, was not sure, so she told me that I should wash my mouth with a bicarbonate solution and some corticoids too, as I did long time ago. I got a prescription, but I don’t think that I will follow the suggestion: if it is not GvH but a simple irritation, then the corticoids are useless and will make my immune system weaker; if it is GvH, I better “keep it” until next month, at the time I will meet again my graft doctor (at this time it might have woresened so it will be clearer). First time I don’t follow the prescription since I received the stem cells transplant! I hope my doctor will not be upset!

In two weeks, we will go to visit Alsace, est border with Germany… good food, good wine, beautiful landscape!

Enjoy life!




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