Month: November 2017

Mended human being or Augmented man?

Mended human being or Augmented man?

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!

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Being old and stupid!

I have been silent for some time. So, here I come back, as a very stupid and old guy!

As I told previously, I have been very lucky to recover so fast after the stem cells graft. It is due to a young “100% compatible donor”, a fantastic team at the Saint Antoine Hospital, and of course because of my family and friends who were always close to me to share good and not so good moments with me.

The graft is working so well that it is doing too much! As a consequence, I have a small chronic guest versus host disease (c GvH) affecting the mucous membranes and the liver.

And here is coming the connection with the “stupid old guy”. According to my graft doctor and my family doctor, the GvH in the mouth is finish. However, when I visited my family doctor, she told me that I had small scratchs in the mouth… Then I realized from where it was coming! As you might know, I am a great fan of making my own bread. Very often, I use multigrain flour with a lot of small grains inside. Each time, I eated this bread, I felt some kind of  abrasion … Of course, since the mucous membrane is very soft because of the past GvH, I hurted myself! So stupid!!! Now I use “white flour” to make the bread! This was “stupid old guy” number 1…

Moreover, beside being old and stupid, I am kind of shy. Before meeting my graft doctor two months ago, I noticed some kind of scratchs on another mucous membrane, the genitals. I guessed that it was another sign of GvH, which is known to affect also this part of the body. I did not say anything about this: too stupid! Then, two weeks ago, I met with my graft doctor again, and I was close to keep my mouth closed regarding this issue… but my wife was there and said: you forgot to speak about some thing. Then I had to explain what this small problem…. And last week, I ended up visiting a dermatologist in the Tenon hospital. She gave me an ointment with corticoids… If I had been less stupid, I might have started the treatment two months ago: old and stupid guy number 2!

To try to solve the c GvH problem, I still have photopheresis every 3 weeks, and it seems to work for me! And, as my graft doctor is always telling me: it is not bad to have a little bit of GvH: it is a sign that the graft is working well!!!

I would like to finish today with this song of Georges Brassens , a french poet and singer, who wrote a fun song about being old or young and stupid (well it is stronger than just stupid but I am too shy to translate!).