Hello everybody! I am back after a week spent in Roscoff-Brittany! At tne end of the post, I will add some photos taken during the trip…
First, some news about “my c GvH” (chronical guest versus host disease). It seems that the “mouth problem” is decreasing, according to my graft doctor and also the dermatologist I met at Tenon hospital. I hope it is related with the photopheresis treatment I have done since a few months (15 times already). As for “the other part of my body”, I started the corticoid ointment a month ago, and it appears that it has real effects: yes! So, I look myself as more stupid than before: if I had spoken earlier of the problem with my graft doctor, it might have been solved already now! Stupid, stupid! And nobody to blame but myself! :-)!
Beside that, I am just fine, much better than 15 months ago! I am still tired very easily after doing regular activities, but looking backward it is really a minor problem!
I am still taking a lot of various pills everyday, including the cyclosporine stuff… I hope one day soon, my graft doctor will ask me to decrease the amount I am taking each day… dreaming, dreaming!
Recently, I have been reading papers on “manded human being, augmented man, and GMO. I am for sure “a manded human being” since my faulty hematopoietic stem cells were replaced by healthy ones from my donor (thanks to her!). But, somehow, I am “an augmented man” since the replacement of the stem cells changed me to be a more healthy “and strong” person (at least on the paper). But I can see myself as a GMO (genetically modified organism) since I have two different DNAs in my body working together! Funny is not it?
Here are some photos taken during our trip to Roscoff (Brittany). I will add more of them later…
Enjoy life!
Dear Mister Keller
Thank you so much for your blog.
Recently diagnosed with myelodysplasia, I’d like,if you agree, having the possibility communicate with you by mail, to have some more precious information about your ” story”.
Best regards
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