So today is the day that everyone is excited for but yet dreads at the same time because it can go either way. Yes you can come all this way and still be sent home and you only lose your $1500 testing fee, you pay nothing else. I just want to say at the start that very few people have actually been sent home after the testing phase, typically that is only if a major medical problem is found during testing that would make doing the procedure too risky. And then of course if you mislead the clinic on your EDSS score and you are more disabled then you told them, you may also be sent home because the facility isn’t designed to handle people above a certain EDSS score and doing the procedure on those people could be deadly during the isolation phase if an infection sets in because of lack of mobility. So what was my answer….
I WAS ACCEPTED!!!! This really was a stressful day, I ended up waking up around 4:30am and could not go back to sleep and so then I had all morning to ponder what the results would be until Dr. Fedorenko came in and told me between my two breakfasts today. The whole process of getting the results took about an hour. First Dr. F came in the room with a giant envelope and a binder with all my medical info in it. From medical records and neuro reports I had originally submitted to all the test results that I had done here. He went over every test with me and showed me what my results were, I am considered to be completely healthy and normal with the exception of the MS. The only thing that was not in the normal range was my Vitamin D levels, they tested at 130 nmols, which is considered above recommended range, but my target Vitamin D levels have been between 150-200 nmols, so I’m a bit lower than I normally try to be, but I also haven’t supplemented it in about a week. That wasn’t a problem at all though as it doesn’t affect anything, so no biggie.
Then we got to the MRI scans. Now for a person with MS you never really know what to expect on the MRI scans, it either can look the same as before or can have a lot more lesions. For me, my MRI scans really didn’t have much change from about a year ago and I had no new enhancing lesions. I however have not had a relapse since November so I really wasn’t expecting much change in the MRI as most of my problem areas are in my spine. The MRI did show 10 small lesions in my brain, mainly around the optic nerves, and those were all the ones I had seen on a previous MRI and the additional ones were from my more recent relapses, most recent relapses have affected the eyes. Then my massive lesions on my c-spine were pointed out, and then he also pointed out all the MS damage along my spinal cord and it was pretty visible via the scans. He did point out my lesion placement and discussed why this treatment is the best option for me as another lesion in that area could lead to paralysis. I am still RRMS and still was having relapses, but currently my MS is not very active, hence the no new lesions
He then went on to discuss the treatment in great detail along with the differences between the different protocols offered around the world. He went over all the possible risks from the treatment and basically anything you ever wanted to know about HSCT was covered in this session. He then offered me the opportunity to undergo HSCT which I accepted and then he said that based on the length of time I’ve had MS, my current EDSS score, health, etc. that my chance of success for halting my MS is 90-95%, a bit higher than most. It still may not work, but hell it’s worth a shot. He shook my hands several times before he left and was really happy for me. This man truly does care about his patients. So treatment starts for all of us on Saturday, leaving us to have another free day tomorrow.
So once that was over, I was free to leave the hospital grounds if I chose to for the rest of the day. I waited until one of my HSCT buddies was done with her last tests and then me, her and her hubby hopped a tram and headed over towards the Vega Motel to hit up a marketplace located in an old castle there. I hadn’t left the hospital area since arriving at the hospital so really had no idea how the public transit worked here. But they showed me the ropes and it really was rather simple. Most of their trams are older, but they are very efficient and gets you to where you need to go in a fairly timely order. I’ll do a post in the future on public transit around the area.
We spent some time roaming around the grounds of this old castle and then shopping in the marketplace. They have a lot of neat things you can buy for gifts there. Tons and tons of every type of nesting doll imaginable. Browse the whole area before you buy, since prices do vary a bit and most of the items are identical from booth to booth. Prices are pretty amazing though compared to US prices. And then they have a plethora of furs and those vendors will chase you down and put hats on your head to convince you to buy them. It’s entertaining yet annoying at the same time. My buddy and her hubby and been to the market a previous day so they knew their way around, so they gave me a little tour. It was a fun relaxing afternoon and the weather wasn’t all too bad for me, a bit windy but tolerable. Here’s a couple pics from our outing, pics of me taken by my HSCT buddy.
After that fun adventure, I left them at the motel and headed back to the tram station to catch the tram back to the hospital. It took about 15 minutes of waiting until the next #11 tram showed up, but I even managed to get off at the right stop by the hospital! Not that it would have mattered since the tram turns around right there and starts back, so pretty idiot proof.
So let’s discuss the menu for the day. Like always there are 4 meals a day. Breakfast #1 shows up around 8:30-9:00am depending on the day. Breakfast #2 shows up around 12:00pm. Lunch comes around 2:00pm, and then finally dinner at 6:00pm. Breakfast #1 consisted of a square of egg, guess you could call it a quiche or casserole, regardless it was basically egg whites baked in a pan and cut into chunks. A white gooey mixture that sorta looks and tastes like tapioca, not sure what it is, but for future reference I will refer to it as the tapioca slurry. And then some bread. Breakfast #2 was pretty boring, the standard hunk of beef, 2 cooked apples, plum tea, and baby yogurt. Here’s some pics of those 2 meals.
Then came lunch. I actually wasn’t here for lunch today, I was off at the marketplace, but they still leave you food. So it had been sitting there for several hours by the time I got back so I salvaged the bread and everything else got tossed. It actually had some items on it that looked interesting that I hadn’t tried before so kinda bummed. It had the normal buckwheat side, but then it looked like slices of liver in some sort of sauce. Along with fish soup and bread. Then dinner time! Tonight it consisted of some white fish fillets that were quite bony. I have yet to figure out what type of fish it is but given the taste and texture I’m assuming it’s something like pollock or whiting. Then a side of mashed potatoes, bread, and the usual pack of cookies. Here’s the pics of that meal.
So that was my day. I think I’m the only member of my testing group that is actually staying in the hospital tonight, everyone else has carers here and I think everyone else bailed and is staying in the motels tonight. They don’t know what they are missing out on! I mean I did get to see some lady training the maintenance workers how to do some crazy dance in the ally between the buildings, they all missed out on seeing that excitement, they were even recording it. I’ll probably end the night by coloring or cross-stitching. Hoping I can do my pelvic ultrasound tomorrow morning and then I’ll be done till Saturday. My plan was to spend tomorrow roaming around the Kremlin and Red Square area but that whole area is closed down today and tomorrow, so no doing that. I do plan to visit it one of these days though before the neck line goes in and we are stuck in the hospital grounds!