The first days in Russia

Day 1: Arrival in Moscow
Well ... As you probably have noticed, I did not get around to providing all of you with updates about my illness and Multiple Sclerosis in general in the months leading up to my treatment. My attention has been focused on making preparations and getting the best mindset possible to get through my treatment as good as I can.

In the first video update I told you that the trip to Moscow would take place on 11 February 2020. In spite of storm Ciara, our flight went as scheduled and we arrived on time, around 17:00 (local Russian time) in Moscow, together with my parents.

The first intake at the clinic took place on the same day, which meant we had to go directly to the clinic after our arrival at the airport. This was a car ride of another hour. Once we arrived at the clinic I was escorted to my (temporary) room where I would spend the day after. The reason for this temporary room was that the floor where all international patients were staying was full at this time. On Wednesday, some of the patients would finish their treatment and would be released from the hospital.

After some general information about what the coming days would look like and receiving some questionnaires, the first day was over and we left for the hotel (near the clinic) to check in and eat something. After arriving at the room it was already time to get ready to go to sleep, since the next day I was already expected at the clinic at 07:45 AM!

Day 2: A day full of investigations
On the second day we were already at 07:30 am at the gate of the clinic to ensure that we would arrive at the room in time. At the gate we had to show our admission ticket what we had received the night before. Every time we want to enter or leave the site we have to show this proof again.

The first full day is dedicated to undergoing examinations to determine whether the aHSCT treatment (stem cell treatment) is safe enough for me and to rule out whether I am definitively eligible for this treatment and whether there might be other potential complications which may show that it is not wise to undergo this treatment (after all, there may always be safety risks due to diseases or disorders that you do not even know you have). To determine this, you will be fully screened. In the end I was subjected to all tests and measurements from about 08 a.m. to 00:20 p.m. See below what has been done (in chronological order):
- Various smears (nose and mouth)
- Blood collection (9 tubes)
- Deliver urine
- Measurement of weight and height
- Echo of the belly
- X-ray examination
- Lung function test
- ECG
- MRI of the brain, neck and back with contrast fluid
- Finally an ultrasound of the heart and the vascular system

A decent list as you can see and quite tiring to have been doing this for more than 12 hours in total! I was not allowed to eat anything until the ultrasound of the abdomen, this test took place around 10 am. Around 20:30 pm everything was over and I was ready for this day. Fortunately, the next day would be a day of rest, which is used by the clinic to map all the research results. The result of this with the final result if they can and will treat me will follow on Friday the 14th at 13:00. I do not expect any surprises here, but as stated, it is of course possible that it is not advisable to undergo this treatment due to, for example, other (unknown) health issues.

Day 3: A day for some more relaxation and the tourist to hang out in Moscow!
On the third day I was free to go wherever I wanted and we chose to explore Moscow with a guide. We were guided by Alexey for this. A very nice man who provides these services exclusively for patients of the clinic (and possibly family and friends). A very big advantage of this is that he knows exactly what people with MS are struggling with and can therefore take this into account and support it very well. He also speaks English fluently, very pleasant! Alexey drove us around Moscow all day to show us all interesting and beautiful things, supported by lots of historical information and fun facts about everything in Moscow. We would have been to the red square and have seen the Kremlin and the Basil's Cathedral. Unfortunately I could not see these buildings from the inside, this would unfortunately be too much walking (with many stairs) and was therefore discouraged by our guide. In addition, we have looked at many other things and luckily I was pushed in a wheelchair by my parents to do all this! 🙂

We also made a relaxing boat trip on the Moskva river with a traditional Russian meal. Also during the tour we were able to see many things with explanation and historical background of Alexey. A very successful and fun day, which despite of the frequent sitting and a lot of help from my parents and the guide, was very tiring in the end, but this was more than worth it! Tomorrow the results of all tests!

I would like to thank you again for all donations, sweet words and other support! I could not do this treatment without you. I cannot say often enough how grateful I am for this! You are very welcome to leave a comment on the message. Until the next update!

Greetings,
Stephan

(PS: I'll add some more pictures tomorrow, but by now I'm pretty up and it's time to sleep)

9 Responses to “The first days in Russia

  • Lenie Bezuijen
    5 months ago

    Good morning Stephan, it was certainly exciting and the flight went on happily.
    The head is gone and luckily you were able to spend a day sightseeing because after the green light this afternoon the treatment will start quite spicy tomorrow.
    We wish you a lot of strength by going through this process, but you will get a lot in return, I know for sure, thank you for keeping us informed.
    We are all in your thoughts and we follow you closely!
    Lots of love and a big hug from
    Henk and Lenie (your mother's girlfriend)

  • Super sweet Henk and Lenie, thank you so much for the sweet words ❤ Also on behalf of Peter and Ina

  • Hi Stephan
    What a great tour of Moscow, a great boost for the start of the treatment. Hope good news this afternoon!
    Lots of strength, love Ans and Medi

  • Good luck with the treatment and it's great that you and your parents were able to enjoy beautiful Russia yesterday. Greetings Wendy van Bochove

  • Thank you for the dear ones Ans and Medi! The following message has been posted and the result has been announced! (spoiler: I am approved for treatment! :))

  • Thank you very much too, of course Wendy! : &

  • :) *

  • Annelies van den Broek
    5 months ago

    Hello Stephan what a good news. How sad for the other boy. We are now going to give a lot of thumbs and hope. A big hug for tomorrow, and of course we will continue to follow you ... strength again, darling ❤️

  • Hi Stephan, how nice to hear you are approved for treatment! Good luck the upcoming period. I will give you a thumbs up and follow you through your site. Also a big hug for your father and mother and a lot of strength.
    Greetings Bianca (your mother's girlfriend)

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