Maybe, after all, the photopheresis is working!

Maybe, after all, the photopheresis is working!

I was silent for a few weeks, but it is not because things are not going well! It is just because I was traveling in France! We visited “Alsace”, which makes the border with Germany.

We visited a lot of interesting places such as the Strasbourg Cathedrale, the historical museum of Strasbourg, “la petite France”, Obernai… We climbed “the month Saint Odile” under heavy rain and in mud… We followed “the road of the wines” as Alsace is famous for its white wines, sparkling wines too (“cremants d’Alsace”). I did not drink too much wine, as I still have some problems at the level of the liver!

Speaking of health, some weeks ago I spoke about the GvHc making, maybe, its come back in the mouth. I think I was just wrong, as I don’t feel anything right now: is-it a sign that the photopheresis is working????? I hope so! I will know more next week as I have an apointment with my graft doctor (I will have also another round of photopheresis).

Another very minor problem I have, is feeling “cold”. Before I did not know what it was to wear a pullover, but now I need to wear more clothe that “before”….

I still have to take several pills every day, but I hope next week, my graft doctor will lower again my cyclosporine… Let’s hope for the best!

Here are some photos taken during the trip to Alsace, including some new photos of my good friend Saint Antoine! Enjoy!

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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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Happy New Year 2018!

Happy New Year 2018!

Happy New Year 2018 for everybody! May all your dreams become realities!

For me, last year was the year of recovery. I still have some small problems, but it is OK: I can live with them! On my way back from the moon, I would say that I am now in orbit around earth, waiting for the best time to land… I am still dreaming of being able to live without taking any cyclosporine.

Last time I visited my graft doctor, she gave me a news I was waiting for: we are starting to decrease the neoral! I will keep the photopheresis once a month, but it is not a big deal…

Once again, I would like to warmly thank my donor, the doctors and nurses at Saint Antoine, my family and my friends: they all saved my life!

Please, don’t forget to enjoy life!

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