Testing Day 1

Fun and games are over for now. Time for the real reason we traveled to Moscow, HSCT. My motivation: STOP MS PROGRESSION & MAINTAIN A DECENT QUALITY OF LIFE!!!

Checked into Pirogov Hospital a little after noon today. Had the pleasure to meet Anastasia Panchecko and then Dr. Denis Fedorenko. Got settled into my room and was immediately served lunch. Lunch was decent, but certainly not up to the quality that we have been enjoying so much since our arrival. 

Had the privilege to meet Sarah who is in a room across the hall from my room. Sarah is from the UK and we had a few chuckles during a brief visit. She had a neck catheter installed shortly before we arrived. She posted this picture on her blog right after it was installed. Its nice to see her in good spirits. Sarah gave me permission to share this photo. We talked some about paying forward for other MS patients considering HSCT. We both followed others who were trailblazers and shared their stories and experiences. It would be absolutely wonderful if we are able to give hope and inspire others to maintain their quality of life as best as possible through HSCT. 

First test was completed in the form of an EKG. Will likely have a couple more tests today. Testing will get underway big time tomorrow. It's likely going to be an action packed day and am planning on being wiped out tomorrow night. 

Alicia fell ill yesterday with a sinus infection. She is really tired and suffering from a tooth ache and tenderness on her cheek. She was given some antibiotics and left for the hotel early. She was to leave before dark, which will make it easier to find the metro (subway) station. I still worry about her being by herself now.

Here is a photo of my hospital room.This is the first room that I will stay in, then will transfer elsewhere as the treatment progresses. Was given an MRI in the evening. Great to see that they have a high quality MRI machine. It is a 3T Siemens scanner and is top notch. Should get the results of all the testing on Wednesday or Thursday. They are going to run several tests on my heart as I have been having some issues with arrhythmia's. Will need to pass all of the tests or I will not receive treatment. Rather I will have to leave Russia without getting treatment. Keeping my fingers crossed that all goes well.

Market place

Second day in Moscow is dedicated to shopping for our kids. (We even splurged and bought something for ourselves.) Luckily there is a market place within walking distance from our hotel. Didn't really have an idea of what to but for everyone and had no idea what to expect at the market place in offerings. But it didn't take long to find something for everyone and we had a blast haggling on prices. In the end everyone was happy, the merchants were fun to talk with and kid around till the sale was complete. Here is the entrance to the market place with Alicia posing.

We had not expected to buy anything for ourselves, but we both ended up buying russian hats. Should have had those hats from the beginning as its been cold and windy since our arrival. Very warm hats, I like them. They are supposed to be rabbit hair hats, but I cant tell if they are. Typical tourist stuff. Ha! They sure are soft though.

Alicia sampled a red hat, but settled on the black one. I like them both. Glad she bought the black one. It suits her well. 

My darn hip is still bothering me today so we went back to the hotel and rested for a bit before going out for dinner. The wifi is very spotty at the hotel so it makes updating the blog a challenge. Will try to keep up the best I can.

Japanese food is the cuisine we both agreed to feast on for dinner. The Russia HSCT forum had made this recommendation for us. Again we had a tremendous meal. The one thing both Alicia and I think is that the food quality has greatly exceeded our expectations. Enjoyed two glasses of Kirin beer with our food, the second beer was gifted to us by our waitress. A very generous offer that we thought was so cool. Going forward I know that the food in the hospital is quite bland so I am very glad to have experience the fantastic food of Moscow. We began with fried calamari.

The menu is very extensive with so many choices that all look awesome. We ordered a variety of things and shared it all. On our plates we found Salmon, Tuna, Octopus, Shrimp, Eel, Caviar, Duck Spring Rolls.

To top off another fantastic experience was some great desserts. Death by chocolate, an egg pancake filled with three types of chocolate and banana. A baileys cake was our second choice. Both absolutely divine. I think we have been totally spoiled and wonderfully surprised at how good and reasonably priced the cuisine is here.

Fun and games come to an end tomorrow when I get admitted into the hospital at noon.  

                                                                                                                                                                                 

So much to do, and see, so little time

Today was a busy day from the beginning to end. We had a great time, but only wish we could spend more time for ourselves.

We kicked the day off with sleeping in. HaHa! Really needed some rest after the marathon travel day the day before. Had breakfast at the coffee shop in the hotel. Food was good and service quick. Decided to take taxi to Red Square as a first destination. It was really something else to see first hand. Snapped a photo of the unknown soldier also.

Walked around the grounds of the Red Square for awhile. Made visit to Lenin's tomb. Was a very surreal experience. Lenin looks like he is taking a nap. Very natural. Unbelievable job of leaving him looking so natural. They do not allow pictures inside so the best we could do is an outdoor picture of his mausoleum.

St. Basil Cathedral is right next to the Red Square. The structure is absolutely beautiful in person. Hopefully this photo does it justice. We did not go inside, but now wish that we would have.

Seemed like we walked a hundred miles. But, it certainly was a significant amount less than that. My right hip began to hurt immensely so we had to kind of cut short some of the things we did at Red Square. We decided to grab a meal at a highly touted restaurant near Pushkin Square. Both of us thoroughly enjoyed the food at Pushkin Cafe. Alicia had a veal loin and I had the veal cutlet. Alicia commented on her meal as perhaps the best meal she has ever eaten. She is her Mother's daughter! Ha!!!(one of her mother's sayings) Alicia and I shared a pistachio creme brulee, divine!!

The decor of the cafe is exquisite. It is circa 1825, it looks and feels very authentic. Here is a link to their website to see pictures of the cafe. (hard to believe its called a cafe)

http://cafe-pushkin.ru/en/

Decided to call it a day as we both were still suffering from jet lag. Our adventurous side took the metro back to the hotel Let me tell you that doing this without being able to speak or read the language made for a challenge, but we persevered. It was interesting and we made good time back to the hotel. Grabbed a bottle of wine in a store next to the hotel and called it a night. We had a very nice time in our first full day of Moscow.

Moscow arrival

A grueling 27 hours after leaving our home we finally arrived at our hotel in Moscow. I am a little surprised that I don't have more jet lag. Must be running on some serious adrenaline. Ha!

We had a driver waiting for us at the airport to give us a ride to our hotel. Thankfully he is a people person and we enjoyed great conversation. Unfortunately our commute was very slow due to heavy traffic, car wrecks, and it being Friday early evening. We are from San Antonio and he is a fan of the Spurs. We talked about the players and the team quite a bit. Funny thing about our conversation is that it veered into American politics too, being that the presidential election is coming up in 11 days. Our driver is better informed about the election that most (uninformed) Americans.

Arrived at the Vega hotel around 8pm local time. Both Alicia and I were hungry after the long trip and eating mostly plane food. We decided to take the recommendation, of an Italian restaurant, from the Russian HSCT forum. The restaurant is located just one short block from the hotel so we walked over there in a cold blustery evening. We both felt very comfortable at the restaurant. We chuckled at the fact that we could not speak Russian but had no trouble communicating to the Chinese waiter by using google translate on my phone. We ordered a pizza on the advice from the forum. The recommendation was spot on. Never had a veal pizza before and we both enjoyed it immensely.

The temp was 30 degrees, not too bad for Moscow, but the wind was really whipping hard. The wind chill factor made it feel downright frigid. Certainly not the San Antonio weather that we had been enjoying just one day ago. There was a dusting of snow overnight and the wind has settled down now.

Today we are planning on doing some sight seeing. I check into the hospital in three days for the initial testing to see if my body can handle the treatment. During this lull we will do some shopping for some souvenirs and take in some sights. We hope to see Red Square today and hit some markets in that area. Will have to see how the energy level is today after the long trip. Jet lag is likely going to limit how much we do today.

Days are now flying by....quickly

You know, I have been waiting for this treatment for 2 1/2 years now and it seemed the day would never arrive. We will be leaving in 5 days and the time is absolutely flying by. Ha!, it sees that there are a million things to do before we will be completely ready to go.

Think that we have things figured out with communicating back home with family and friends. Its amazing what technology can do in today's world. Have been setting up viber, Skype, and messenger on Facebook. It's pretty cool and should help to break up the boredom of being in a foreign country be myself. We can phone call, text, video chat. All for free from I understand at the moment. Sure hope I am right about that.

Alicia purchased a book about the great tourist places to visit in Moscow. It's pretty impressive to see the amount of history and culture that we can partake in prior to my admittance to the hospital. Unfortunately I only get two days to see the sights and do a little souvenir shopping. Luckily for Alicia she will get to spend a little more time around the city while I undergo testing to see if I will actually be able to get the treatment.

Today I chatted on Facebook with a patient, Brandon, who was just released from isolation. He has already seen some fantastic improvements on some of his MS symptoms. It's so very encouraging to hear so many positive results from HSCT for MS. My main goal is to stop the progression of this nasty disease, any improvement of my symptoms is a bonus.I will get to meet Brandon when I admit into the hospital briefly. He will be discharged a day or two after I admit.

Its my understanding, from talking to many people who have been treated in Moscow, that the patients develop a bond with one another. Guess it makes sense in the regard that we all have experienced a very unique life experience with a chronic debilitating disease. I find it hard to explain to someone what it is like to live in a body that attacks itself randomly. One never knows what is next may happen next, what body function may not work tomorrow. Its kind of a psychological warfare, very unsettling and something the average person does not have to deal with. We have to deal with this all the while that we may look normal, ie the invisible disease. I look forward to meeting and talking to everyone in Moscow and developing a bond with them.

Till next time friends!

Been away for too long! :-(

Owe everyone a big apology for stepping away from publishing any new posts for quite awhile. The treatment that was scheduled for April was postponed until October 31. Just three short weeks away (Yay). I want to tell you that I am very sorry for not keeping you all informed of what was happening. Promise to do a much better job going forward.

Alicia and I fly to Moscow on the 27th of October this year (2016). We will arrive on the 28th and my admission into the hospital is the 31st. This will give us chance to do some preparation for my one month stay. We'll likely take in a little bit of sight seeing and maybe pickup a few knick knacks to bring home. Planning to stock up on snacks, soups, drinks and whatever I may need to have for when Alicia leaves. She will be staying there for the first 10 days. I'm very appreciative of her trekking half way around the world with me. She is much more of a world traveler than I, so I'm grateful to have her experience for this trip.

Must tell you that I am overly eager to begin the treatment. Waiting for two years and 4 months is a long long time. Its seems like forever that I reached out to Anastasia to see if Dr. Federenko will be willing to treat me. It's hard to put into words as to how excited I was to hear YES!!! Looking very forward to meeting these two people.

Many people have written blogs about their experience of getting this treatment around the world. It seems to me that many second guess themselves or are just downright scared. Wonder if I will follow suit with what I perceive to be human nature and natural feelings. So far so good, but we will see what happens as the clock continues to wind down.

Hope you all will follow along as we plan to post photos and try to tell the story so that everyone can get a feel of the experience. Should be a unique trip and adventure. My wish is it will be a story that gives people hope, when it feels like there may be no hope. MS is a hopeless disease currently. My friend Jaime, who also has MS, told me the other day. "Good luck, this gives us hope" My belief is that HSCT does give our MS community hope.

Some say they would never do this treatment. I understand. Things like this are not for everyone. But I would also add this. You really do not know what you would or would not do until you are in this horrible situation. MS is a very lonely disease. As such, making a decision of this sort is lonely business. A person may be surprised at what he or she would do when faced with such a heavy situation. How important are your abilities to you? Is walking, talking, hearing something trivial? Not to me, which is why its a no brainer to seek this treatment from one of the best facilities and medical team in the world. There are many many success story and I aim to be another. It's only a matter of time and it will be approved in the US, estimated to be 6 years. Sadly, time may not be on a MS patients side.

Well, plane tickets are purchased. Hotels reservation made. Wish the clock would hurry. LOL

Till next time friends.