In a few days, on Christmas eve, it will be 18 months since I received the stem cells from my donor. All the doctors, nurses, my donor, my family and my friends did such a great job that I am close to be “normal”! Well, I am still a chimera, with half of me being “a woman” DNA speaking!

Last week, I met with my graft doctor. She gave me the results regarding my blood analysis. As you can see below, it is almost “perfect”! I said to my doctor that I did not remember of having such a nice blood analysis. She answered me: but it is not yours, it is your donor’s blood analysis! Good point!

She gave me a Christmas gift in advance: she told me that it was time to reduce the amount of neoral I am taking each day, since the GvH seems to have “disappeared”  in the mouth, at the level of the liver (reduction of the transminases amount), and on the sexe. I will keep having the photopheresis on a monthly basis, as it is not good to change two parameters during an experiment! Of course, I will continue the other treatments such as antibiotics and the like. I hope the experiment will be successful! And anyway, it is worst a try! If it was a success, I could dream of being “neoral” free for the two years anniversary of the graft, on june 24th 2018!

But I need to be careful: during Christmas time, we are buying small cookies coming from “Alsace”. Those cookies contain “nuts”. After just “a few” of them, I noticed some irritation in the mouth: maybe it will be better for this year to avoid those cookies! In fact, I had the same kind of result when I eated my banana bread contening nuts , or my home-made bread made from “multigrains” flour… My doctor was surprised that I could make my own bread, and asked me to bring her some home-made bread next  time I will visit her at Saint Antoine… Of course I will do it!

For next year, we already have big travel plans: visiting Toronto in february, meeting our Boulder friends in Italy, visiting my good friends in China! We are free to travel!!!

And I would like to take the oportunity given to me to wish everybody a Merry Christmas and an Happy New Year. If I am ready to enjoy this new year, I know that it is because of people in Saint Antoine Hematology dept, of my anonymous donor, my family and my friends! Thank you everybody! I love you all!

Enjoy life!

 

I am now almost 18 months after being “grafted”, and I am recovering pretty well, thanks to the super medical team at Saint Antoine Hospital, my wonderful donor, and my caring family and friends.

Before the graft, with Jaja, we have tried to learn as much as possible things related to “hematology” and “immunology”. Each time we come close to a new subject, such as chronic GvH or photopheresis, we try to “understand”…. Literature search!

More recently, a question came during a sleepless night: why in the search for a compatible donor in allograft the blood group of the donor does not matter? It is kind of strange since, after the new stem cells start to work to produce red blood cells, there is “old red blood cells” which remain in the body. No risk of having to bloods with different groups? After searching on the web, I came across this paper, which explain that everything in related to the immune system: http://www.nature.com/articles/1703135

Hematopoietic stem cell transplantation between red cell incompatible donor-recipient pairs by S.D. Rowley, Bone Marrow Transplantation (2001) 28, 315-321

Reading this paper makes me realized that I am just a beginner in the understanding of “hematology” and “immunology” ;-)!

Anyway, if I was younger, I would be really interested in taking some classes on these subjects! Doing an internship with people at the Saint Antoine hospital hematology department?

Don’t forget to enjoy life! A big hug to everybody :-)!