What a year!

What a year!

What a year! Just a year ago, we were coming back home after 3 months spent in Boulder-Colorado. A few days after coming back I had a blood analysis, 3 months after the previous one. The results were very surprising: anemia! Considering that just a few days before we were hiking at 3000 m in the Rockies, it was kind of difficult to believe… Anyway, I had the first red blood cells transfusion of my life. It is hard to understand why I had no problems walking for kilometers at “high altitude” and in the cold without any problem! This transfusion was very effective and lasted up to 3 months; I then had to have a second one, in addition with a platelets transfusion…

I had a first myelogram done early in 2016, which did not show any real change when compared with the previous ones. Then later in march/april, the new myelogram demonstrated clearly that the situation was degrading fast: I had blastes in the bone marrow, not a good sign… For the first time ever, doctors suggested that I might need an hematopoïtic stem cells transplant, and the sooner would be the better. Two of my brothers were tested for compatibility: 50%. Doctors said that it was possible to do with one of my brothers, before they looked to international donnor  data base. They found a 100% compatible donnor: what a luck for me! In order to slow down the evolution of the myelodisplasia, I had a run of Vidaza, which was very effective to block the evolution. At some point I started to think that maybe I could make with Vidaza, as I was so afraid of the transplant… Doctors and people around me convinced me that it will not last a long time before Vidaza will not be anymore effective. Then, because of the bad effects of this drug on the body, I would be in a worst situation. In june, I learned that the transplant would happen soon. I entered the hospital on June 15, had a chemotherapy for 6 days (some fever, vomiting, the usual stuff!). Being in aplasia, I had to stay in a sterile room, but Jaja and friends had the oportunity to visit me. On friday june 24, I had the transplant, which was a kind of disturbing event: it was like a red blood cells transfusion and lasted half an hour. But this event was very very important: it saved my life!

I spent 4 weeks in the sterile room, which is pretty short… On July 13th I headed  back home! Youpi!

On Christmas eve, it will be the 6th “anniversary” (in months) of my second birth! As a newborn, I will need to do again vaccines: funny is not it? I am still fare to a full recovery: I will need up to a year! It is a good class of patience! Some time the spirit is low, like when I got the news that I had a limited GvH…. see previous blog.

Anyway, I wish you all a Merry Christmas! Here is a short comptine my father used to sing us when I was a child. It is in french but there is an english version too: enjoy!

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Cyclosporine is making its come back!

Cyclosporine is making its come back!

Greetings from Bures!

Last week, I had an apointment at Tenon hospital to have a carcinome removed by phototherapy. The dermatologist had a look to my skin and “discovered” that I had “likens” in the mouth. It was related to a “GvH” (guest versus host attack. I went two days later to the Saint Antoine hospital to have a confirmation: yes it is a weak GvH. The doctor gave me a solution to wash the mouth and increased a littl the amount of cyclosporine I took: 2 times 50 mg instead of 2 times 10 mg by day…. I expected to finish to take cyclosporine for Christmas but no!

Today I went again to the Saint Antoine day hospital for a blood analysis and a mouth checking: the “lichens” started already to disappear. Moreover, the blood analysis is now close to normal!

What a year! Last december we were climbing high in the Rockies! But I am on the right track with new hematopoietic stem cells of high quality!

This year I learned a lot, of course in hematology but above all I learned that we should never forget to enjoy life every day: it is such a precious thing!

Merry Christmas to everybody! And thank you for helping me to “survive” those difficulties!

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