Sorry for being silent for so long!

Over the last few weeks, I have had a lot of digestive problems. At some point, I had to stay for a week or so in the hospital again. Now, the situation is improving gradually, but there is a need to be patient…

Recently, I had a myelogram done: the graft is working perfectly well, so that I have an almost “regular” blood analysis!

I am now at D + 70 after the graft: it was time to look for “chimerism”, using some sophisticated analysis on the bone marrow: looking for “my DNA” versus “the DNA of my donnor”. Only less than 0.01% of my DNA has been found: I am now a true chimera with my old DNA being in charge of everything but all of what is connected with “blood” (including the immune system), which is directed by the guest’s DNA! Funny is-not-it to be both man and woman: X-Y/X?

At D + 90, I will have several exams to compare with the sames I did before the graft….

Talk to you later!

On wednesday afternoon, I got the news from the doctors: I was ready to go home the next day:Yes! Although nothing really clear was discovered regarding the “inflammation of the digestive track”, they assumed that I was able to handle it!

So here I am, back home and very very happy!

I hope it will be the last visit I will pay to the hospital….this time, 10 days!

Enjoy life!

Since going back home on July 13th, I visited the day hospital 3 times already. Each time, doctors explained me that they were happy with my recovery! I jus have some red spots on the skin, which can be seen as a sign that the graft is working efficiently. It is called a fight between host and guest but it can be kept under control using the cyclosporine.

Today, I got the results for the first myelogram done at D + 30 last thursday: everything is normal! Yes!

I also got the blood analysis results: I did not have an analysis like this one for years:I am almost back to  a normal analysis with just a small defificit in red blood celles and platelets…

We still need to be extra careful with the food and the cleaning of my environment…

The mainly difficulty I am facing now: being tired and having little energy!

I will have to be patient!!!!!!!!!!!

I came back home on wednesday July 13th, after just 4 weeks spent in the hospital. It was so fast that it surprised everybody, including me !!!!But I will not complain: I am so happy to be home :-)!

Part of this speedy “recovery” is linked, I guess, with the hematopoietic stem cells ‘s donnor. I know a little more about her (yes it is a her!). Of course, as a rule in Europe everything is anonymous, so I will never know from where she is and who she is. I learned that my donnor is a very young woman born in 1990! Because she is so young, her stem cells are very active, so just they were injected in my body, thay started to work almost immediatly. Another very important point is that she was 100% compatible with me! I have been so lucky (Jaja suggested that I should buy a lottery ticket!

The only action which will be allowed in direction of my donnor is to send her a thank you letter, which I will write soon…

Tomorrow, I will pay my first visit to the day hospital. They will do some analysis, like the concentration of cyclosporine in my bood, as welle as blood cells count. Because the stem cells are working so well, I might not need any blood transfusion…

The next visit to the day hospital will be on thursday. It will be D + 30 after the graft; This time, I will have a myelogram done: it is the better way to check how the stem cells are working. It will also be a way to check how close I am to become “a chimera”! As seen on the top photo, a chimera is “an animal” which is made of two different animals, like a lion and a gazelle on the photo. It means that the animal is containing two different DNAs. In my case, it will be similar: I will have my old historical DNA for the old parts of my body, but will have in all the things connected with blood the new DNA of my donnor: I will a chimera! Before having to deal with that personnaly, I even did not think that it was possible to live with two DNAs!

To end up this long presentation, here are some photos as I was leaving the hospital and some photos at home!

This morning, I had a regular visit with the doctor. On his way to leave the room, he told me: well you have antibiotics for a few more days, what about going home next wednesday July the 13th?

What a news! What a schock! As we say in french: “je suis sur le cul” (I am on my ass)!

From the begining, with Jaja, we were thinking that I might need to stay in the hospital for around 6 to 8 weeks….

Anyway, I am very very happy and I wanted to share with you this great news!!!!!!!!

In order to leave the hospital, I need now to exchange the  system used at the hospital (chemicals given by injection in the blood) by a solid state approach: it is the key to be able to leave the hospital. Tonight was the first step: I had cyclosporine in pills! This stuff needs to be taken every 12 hours sharp…It should be OK if no side effects!

A few days ago, I had to be shaved, as my hairs started to leave my head: how do you like mu new haircut? It might last a few month before I got new hairs…. It is not so important!

Tonight, we have Portugal-Wales in football: it could be sweet to have “the brexiters” kicked out ;-)!

Dear All, I am not really sure where I left you before stopping “activities”!

Anway,w e experienced some delays with the graft coming late in Paris. The D Day (Jour J) of the graft was june 24th. The graft is not a real “special medical event”, just a transfusion. Everything went fast and was done in less than one hour.

Because of the chemotherapy, I already had some “problems” (fever, plumbing problems…) I had difficulties to eat, so I had a nice device installed on my nose to feed me directly….I did not like it but it was the only way…

I had hard times during a few days (fever until they got the suitable antibiotics, no energy, tired).

After, those few days, I feeled much better…..A week ago, I got the news from the doctor: aplasia was behind: ppmhk the return!

On Monday and Tuesday June 20/21, I had the rabbit anti lymphocite serum delivered. Previously, with the classical chemotherapy, I did not feel anything; with this rabbit thing I felt immediatly a kind of weakness, making me sleepy the all days. At night, I did not sleep well as the doctors are still hyperhydrading me (which means I need to go to the toilets every 2 Hours!).

Yesterday, although I was a little down because of the lack of sleep, I was happy because It was “The Day”: time to receive the new high quality hematopoietic stem cells from my donor! Not this day! The doctor explained me that they were “short” in cells in the graft and that they prefered to have more…..So the transplant is now due today.

Yesterday evening, a nurse came to tell me that I was short in platelets and that they have decided to serve me a glass of platelets!

Oh yes, I forget to speak about my visitors! On Monday I have Jaja and Céline and Catherine: no belly dancing, serious people! On Tuesday, I had Jaja and Marie. Eric did not want to go in….

Today, it should be “The Day”, but at 10:30 am no news yet….

I was thinking: my donor is an english man and he decided to vote for the Brexit just yesterday! I will have to do with half cells!

During the day, we got various news about the graft. late this afternoon, the doctor came to explain that the graft just arrived in Paris but was still in another hospital (Saint Louis).

They planned to do the transplant at first in the evening/night, then changed their mind: tomorrow June 24th is now the date! As Eric pointed, it will be awasome to have those lovely cells swimming in my body tomorrow…..

Today Sunday June 19th is a long day: I  have two chemotherapy one after another (fludarabine, then busulfan), plus some other stuff to prevent side effects and the like! It started around 10 am this morning for the first. At noon, the second chemotherapy started and should last around 3h. Then “Mister Rabbit” will appear for the first time on stage (rabbit antilymphocyte serum (not sure of the correct name).Following discussions with the nurses, it does not seem that this fellow is really a nice guy…We might expect side effects. Well it is another experience.

On the other hand, I have prepared for several days this meeting with Mister Rabbit: as an example, I have taken every time it was possible the carrots soup!!!! (but i have also to admit that during one lunch I had a “lapin aux pruneaux” (rabbit with prunes)…..).

More news regarding my fight with Mister Rabbit will appear soon….

On the bright side of the life, today in Paris we have a little bite of sun: Youpi! Even behind a window, it is good!

Before finishing this short article, I would like to make the following point: of course doctors thing that it is in our good interest to be hyperhydrated so that the kidneys are working fine, BUT it also means that our autonomy is reduced by a large extend (less than 2hours). In a 10 m2 room it is OK, but forget a visit to a movie theather…

Another technical point, which might be seen as interesting for the few chemists reading this blog: the main side product eliminated in the “pipi” comes from busulfan, a sulfur containing compound….when you faites pipi, it smells of sulfur (no need to thank me for those interesting technical details!).