Russian HSCT Comrades

Our journey to Russia for HSCT was daunting but as we headed off for a major medical procedure in a foreign country we had the benefit of knowing other brave HSCT Warriors that had forged the way before us. Through blogs and Facebook groups and private messages we learned about so many amazingly courageous MS’ers from Australia and abroad that had already paved the way. It takes a certain person to open their lives up, to share their journey and their experiences, we are so very grateful there are people that have and still do. The tips, hints and tricks that are shared have made the whole journey so much easier for us and the many others that follow us.

One of those amazing people is Kristy Cruise. Kristy not only inspired us but hundreds of people worldwide to take control of their own health and in particular to seek HSCT. She invited the world into her life, her family’s lives and shared her journey to fight for the right for the chance at halting MS. She has been an inspiration to us since we first came across her story as it was unfolding in real time back in 2013 on a Facebook group. Months later when the ads aired for her 60 Minutes ‘Russian Roulette’ story we finally took the plunge and after 18 months of research we followed hers and others very brave steps. 

Kristy Cruise -
our HSCT Queen

We contacted Dr F and booked Aaron in as a patient at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia – the start of the long journey we are on now. 

Kristy may not have been in Russia with us physically but her advice and support prior, during and after has been and continues to be priceless. We hope that by following her selfless example and sharing our story we might reach just a fraction of those Kristy has. I also hope that by being a Warrior Wife I not only paid it forward in Russia a little but also through writing Aaron’s blog and sharing the entire journey on the net.

Back to my Russian HSCT Warrior Family – my comrades in Russia for 28 days :) We were so blessed that there were Aussies already in Moscow when we arrived. Our very first night we were welcomed to the Vega by Libby and her Friend Jenny. Libby’s daughter Emma was another Aussie already in Russia for HSCT. They invited us to dinner where we met two other carers that were just about to leave Moscow. It was a warm and friendly welcome to a foreign country and made the first night a whole lot less daunting.

Jenny Libby & I at the Vega on the day they departed Moscow

Emma, Aaron, Me with Mary Kaye's Brother & sister in Law

The first Monday as Aaron admitted to Pirogov we were welcomed to the hospital by Emma. Em and I met online, we followed each other’s fundraising, and we shared our tips and hints supporting each for the months leading up to setting off for Russia. We were all anxious to meet in person and big hugs were had that day. I will be forever grateful to Em, Libby and Jenny for their friendship & support as well as the important role they played in our journey in Moscow on so many levels! My first day traveling to the hospital alone Libby & Jen showed me the ropes which set me on path for transport for the remainder of the month – I was only too happy to pay it forward and show those that followed the same ropes.

HSCT Warriors Aaron & Emma

There were also 3 other Aussies ladies already in Pirogov including Irene another online HSCT friend and Mary Kay from Michigan.  Meeting some of our ‘HSCT Warrior Family’ in person gave both Aaron and I strength in the early days and it was lovely to have familiar voices to speak with each day. (There were also another 2 ladies on the ward, Louise and Cheryll from Australia, who were on the same schedule as Irene). We were so lucky to be included in Em, Mary-Kay, Irene, Louise and Cheryll’s New life Birthday celebrations.

The day after we admitted Aaron to Pirogov we were joined by Troy and his carers Neil and Marilyn. Again we had been speaking to Troy online as well as on the phone in the months leading up to Russia and I have been online friends with his Mother Anne for a few years now – our connection being through MS. Aaron and Troy would become Stem Cell Buddies as their treatment took on the same schedule. They experienced everything from testing to stimulation shots to Apheresis (stem cell collection) at the same time as well as sharing chemo days and the big transplant day. Experiencing the traditional New Life Birthday celebrations side by side highlighted their journey to HALT MS together.

 

Neil and Marilyn would become my travel buddies, dinner companions, supporters, helpers as well as my friends during the month we spent together. We were all staying at the Vega, we traveled to and from Pirogov together and we even took a little time out to enjoy Moscow as tourists together. I will be forever grateful to Marilyn for almost insisting we attend the Bolshoi Ballet & Red Square by Night – truly a highlight of my time in Moscow and an experience I will NEVER forget. I would have had many more lonely nights and been by myself for a lot more of my time in Moscow had I not had their companionship.

Marilyn, Neil & I on our way to Red Square on the Metro

Neil, Marilyn, Frank & I in front of St Basil's Cathedral

 On my first weekend in Russia I was joined at the Vega by our new friends and fellow HSCT’er Natalie & her husband Paul. I met Nat & Paul briefly in April when I attended Kristy’s 2^nd HSCT Forum in QLD. We have chatted on line a lot since then and it was lovely to catch up with them again. This time in Moscow just as we had planned 6 months earlier… when it all felt so far away! It was like seeing old friends and meeting new ones all in one xx We spent the next three weeks together bonding and sharing a unique experience in a unique part of the world. All while learning more about each other and sharing stories about our respective families. I missed Nat & Paul for the first few weeks home, actually I still miss them! They are such special people and I was blessed to spend such an intense time of my life with them. I hope they know how important they were to me during our time in Russia and that I still carry the strength, wisdom, advice and friendship they shared with me now.

Libby, Jenny, Paul, Natalie, Me, Marilyn & Neil

Warriors Aaron & Nat with their Azza Straps!

The day Nat admitted to Pirogov during Aaron’s 2^nd week we were also joined by Matt & his girlfriend Laura from the UK. They had not been expecting a support crew and it was really nice to welcome them to Pirogov and adopt them as ‘honorary Aussies’ showing them the ropes. A few days later our support group extended again when Matt’s brother Bryn arrived from Dubai and was also welcomed into our ‘HSCT Pirogov/Vega Family’. For a few days there were 13 Aussies and our 3 honorary Aussies in Moscow for HSCT.

Paul & Laura

Aaron visiting Matt in ISO to say farewell
on our last day

During my time in Russia I shared all the highs and the lows with my new friends. I was emotional on a whole new level in a whole new world and I was blessed that they welcomed me into their lives and supported me in so many ways. Our new friends made our time in such a foreign land that much more comfortable and a lot less daunting than it could’ve been. The bonds we formed were strong and I am sure we have made lifelong friends.

Marilyn, Paul, Aaron, Laura & Bryn
on our last day at Pirogov

If I didn’t say it enough before I left -
Thank you from the bottom of my heart Warrior Family xx  

With thanks to Pirogov

This blog is dedicated to the people at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia. I cannot give enough praise or truly show my gratitude to every single person that we encountered during Aaron’s 29 day stay.

Aaron and the amazing Dr Fedorenko

I am so very thankful and forever indebted to the amazing Dr Fedorenko for his professional, attentive, compassionate and caring bedside manner. He has an amazingly gentle nature that he shows without fault daily - the man always has a smile on his face and his eyes are always so bright and full of knowledge and wisdom. He truly has a special quality that I cannot describe. At no time during Aaron’s stay at Pirogov did he make me feel removed or disconnected from Aaron’s care, I was never uninformed or misinformed about the treatment and in particular what Aaron was experiencing. Any time if I had questions, fears or doubts he would take the time to talk to me one on one to assure me or inform me the best he could – a perfect example of how he always goes above and beyond caring for carers as well as his patients. Dr F also kept Aaron informed at all times and visited him and all his patients daily (he told us once he was taking a day off to visit another hospital for lectures and we still saw him that day on his rounds!) During Aaron’s two days of Apheresis (Stem Cell collection) Dr F was never far from Aaron’s side and was a reassuring and calming presence. Those two days were hard for both of us with Aaron experiencing Heart irregularities that created worrying times on a few occasions – we could see the concern and care on Dr F’s face and in his eyes. He was constantly informing us how things were going and was in touch with other specialists constantly. All the while still staying near Aaron and reminding me he had it under control and everything would be alright. Again during the Transplant Dr F was right there reassuring us and keeping us informed on the procedure as it happened. We know Aaron was one of Dr F’s 430ish patients but we never at any time felt like a number or a statistic. He treats his patients as individual cases and at all times reminded us that he can only do part of the work with the procedure, Aaron has the hardest part during the recovery. His support during the application process, the month of treatment and by email since we returned home has been second to none. THANK YOU DR F!!

Aaron & Anastasia - HSCT Warrior's!

Then there is the absolutely delightful and all round wonderful Anastasia – I cannot find the words to describe this wonderful lady! Not only is she an inspiration to anyone considering HSCT (she was a recipient of the treatment herself in May 2012). She also shows true dedication and devotion to HSCT, Dr F and her patients. Anastasia has the same work ethic as Dr F and cares more about her patients than she admits – she too works tirelessly and was seen on her day off at the hospital as well as “dropping in” to welcome new arrivals on her “days off”. Without Anastasia the entire experience would not have been as seamless. From confirming and co-ordinating initial booking dates, arranging airport pickups and drop-offs, drivers for day trips, being a translator at all times of the day and night whether in person or on the phone, always ensuring every patient and any carers are all happy that everything is ok and that they don’t need anything (and ‘finding it or sourcing it if so!). To being a great hugger and a shoulder to cry on or being a dance buddy at New Life Birthday celebrations; Anastasia is a breath of fresh air and is worth her weight in gold! I hope that one day we can repay her somehow J Big Hugs and love to you lovely lady xoxox 

The beautiful Anastasia and I
out the front of the hospital one evening.

As with any well organised institution that has strong and effective leaders there are the cogs that keep the hospital moving. Huge thanks to ALL of the caring, compassionate, gentle, kind, and hardworking nurses, food ladies, cleaners and maintenance staff at The A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia. Every single one of them went out of their way to make our entire stay in Pirogov as well as the HSCT experience as smooth and seamless as possible. All of them were nothing but kind, polite and understanding at all times. Whenever they were needed the staff tried to help us the best they could and as professionally as possible. Even with the language barrier sometime causing interesting dialog and some days after they had been working 24hr shifts! I am sure it was not in their job description that they would be required to nurse so many non-Russian speaking foreigners. I doubt that 12 months ago they thought they would be learning to communicate in English. During our stay most of them tried at least one English word if not more and some of them even helped us to learn a few new Russian words and phrases. We are so grateful to them for their patience and compassion on what was a long journey for a very tough month of treatment. I only hope the myriad of Wrigley’s and Cadbury’s gifts we left for them may have given them a slight indication of our appreciation! 

~Our Infinite thanks!

A simple thank you doesn't seem to be quite enough to show our appreciation I only hope my words express our eternal gratitude to everyone mentioned above.

My Russian Expereince

It took being in Moscow for three weeks to get to the point that I needed to start to write a bit about what I was doing on a daily basis. My AAMS reports showed what Aaron was going thru but not the daily grind I was living – or the routine or the things I did regularly as I ‘lived’ in Moscow for a month. It took another 2 weeks being home to re-write it a million times and then share it here now.

My days were not what you might describe as ‘easy’ or ‘fun’ or ‘enjoyable’ there were 'fun' moments and 'enjoyable' times but it wasn’t in general a ‘fun’ time. I was in a foreign country for 30 days. Essentially I was alone and overseas for the very first time in my life! And I was in a country that is not English speaking as well as being half way across the world geographically from everything and everyone I know and love. Russia has a different culture to anything I had ever been exposed to! Eating was a constant challenge, finding a suitable place to eat meant searching for a menu in English or a food that looked familiar to the eye. Shopping was a whole new experience with the App Word Lens on my mobile becoming my best friend! I only got caught out once with purchasing something the Russians like that is a sour milk – just add to Coffee and it curdles straight away, you know pretty quickly you got the wrong thing :P That was the last time I rushed a purchase!

The view from my window at the Vega
when I arrived 22/09/2014

The view from my window at the Vega
on the day I was leaving 20/10/2014

I lived, ate, and travelled thru the Izmailovo area of Moscow staying at the Best Western Vega. The hotel was originally built to house international travelers to the 1980 Moscow Olympic Games. The Best Western Vega Hotel and Convention Centre sits on the site of a former Romanov royal estate of Izmailovsky Park. The park is a great place for a stroll and affords the opportunity to watch ordinary Muscovites at their leisure. I got to see the area change over the month from warmer days of +16 thru to  -6 and snow!
I was so lucky to often have the company of other carers - we traveled at similar times or ate together. The night we arrived we had diner with Emma’s carers, her Mum Libby and close family friend Jenn. The day after we arrived Troy from southern NSW and his Carer Neil arrived, Neil’s wife Marilyn came along to watch out for Neil so that was two other Aussies right from the start. A week later Natalie and her hubby Paul arrived – Paul was also staying at Vega. The day they admitted to Pirogov we also met Matt and his girlfriend Laura and brother Bryn, both staying at the Vega; our honorary Aussies for the next few weeks! We would travel together and share our trials and tribulations as we traveled the HSCT Journey as carers together in Moscow. I forged a true bond with the group and I miss our evening meals and nights in the lobby ;)



Each day I would get up quite early – usually by 7:15am to shower and dress and prepare my backpack (which was heavy and actually bigger than me) with supplies for Aaron such as clean clothes (that I had hand washed in my bathroom and hung to dry), bottles of water and food. Most days I would arrange to meet at 8:00  to 8:15am in the lobby with one or more of the other carers staying at the Vega where we would buy a coffee at the coffee shop head off for the day. I was lucky to have the route shown to me by two lovely ladies (Warrior Em's Mum and BF); Jen & Libby – they showed me the ropes which I then passed along to other carers.

Jen & Libby - visiting the ISO ward.

Jenny, me & Libby in The Vega lobby
the morning of their departure :(

Our daily route was this: we would walk a few blocks from the hotel through the estate of buildings, through the underground tunnel, through Izmailovsky park and across to the tram. The tram ride was $100 rubles (approx. $2.60!) for 4 trips or on average two days back and forth to the hospital – so it cost me approx. $10 a week or $40 for the months travel on the tram! It was a quick 10-15 minute ride as long as there are no accidents on the line or delays - in which case it is about a one hour walk. Some days the seats were heated which was a strange experience but also appreciated on the cold mornings and nights! Hop off the tram at the end of the line and walk a block to the hospital – some days stopping at the supermarkets or shops on the way.

The walk thru the hotel complex - shops and restaurants along this section.

Izmailovsky park

Izmailovsky park in the rain - looking towards
the tram station

The tram stop in the morning on one of the colder days!

The morning tram after a small snow storm

Tram stop in the morning on my 2nd last day

The park on a wet miserable day - still beautiful!

Getting through the guard gate simply all depended on which guard was on. Some days it was a quick show of the pass we were supplied or on some days a closer inspection – then there were the days they liked to play tricks on us and allow us through together and then slam the gate on us for a laugh.

The guards gate look out from inside the Hospital grounds

Walking into the Hospital grounds

We then took the short walk through the hospital grounds to the last building and up two to three flights of stairs (2 when they start out on the 2^nd floor & 4 up to the 3^rd floor). On the 2^nd floor we only had to put shoe covers on, for the 3rd floor isolation ward everyone must gown up each time they enter in the full outfit including mask and hair cover – it’s uncomfortable and it’s hot and hard to breath for hours in a mask.

The second and third floors of this building are where
HSCT patients spend the month.

Heading to the entry doors - this view changed
over the month as did the entire city!

Photo: Aaron enjoying a meal in his 2nd floor room

The Hallway on the 2nd floor

2nd Floor hallway looking towards
the famous patient lounge area

Aaron's room on the 2nd floor

Aaron a little bewildered by the move the the
3rd floor Isolation Rooms

Sam's Laundry room aka my bathroom at the Vega!

Outside the Beautiful Church in the Hospital Grounds

Enjoying the sunshine before treatment started

Inside the church - it is so amazing, full of gold!

The days varied and in the first week and a half the days were full with testing then a few rest days that we were able to go outside in the grounds and out on a day trip. General 'treatment' days (that was the whole remaining 3 weeks) Aaron was served 4 meals per day, generally I didn’t eat while I was at the hospital and spent my time doing ‘housekeeping’ for Aaron i.e. washing plates from the 4 meals he was fed per day, sorting clothes (he wore 2x t-shirts a day and clean underwear and socks daily for 28 days), checked & re-filled water, checked and refilled tablet supplies (meds that we brought with us). Some days I would bring something to heat in the microwave and others I would eat some of our 2 min noodles.

* Here are some of the meals Aaron was served;
The famous tongue (including veins and taste buds!)
Fish (looked like trout and smelt even worse)
The fish soup - often served with the tongue?!
'Smashed' potato & mushy peas
Boiled Chicken and some kind of loaf?!
Apples and Bread
Various types of porridge

The famous Russian Apples!

Many nights we (myself and anywhere from 1-6 other carers) would arrive back at the hotel between 7-7:30pm after leaving the hospital just after 6:30pm most nights. We would walk to the tram stop, catch the tram 15-20 mins, walk through the park under the main road back through the tunnel, through the hotel complex and into our hotel. It was light in the first week then progressively got darker earlier so that we were ‘commuting home’ in the dark in the last two weeks! It became a joke between some of the carers that we were like shift workers. We would often have a quick drink to refresh on arriving at the hotel, a short ‘people watch’ and unload our bags to our rooms and meet again in the lobby. We would then have to pick a place to eat and walk to chosen place, order, wait and often have to choose again as the item we ordered was not available. It was often hit and miss and once we established a few ‘favourites’ we were able to rotate between them.

The complex with restaurants and shops also the route to the tram

Russian Shopping Centre just near the Vega

Hotels by night

Walking back towards the hotel thru
the complex.

We would arrive back at the hotel after dinner on average around 10:30pm and we would ‘wind down’ with a drink in the lobby where we would people watch – the people in the ‘coffee/lounge’ are interesting to say the least! As well as other travelers there is obviously an arrangement between the hotel and the ’Pimps/Ladies of the Night’ that are in the lounge every night – well they come and go if they are lucky! Yep – we were entertained with watching them and wondering about their lives and also giving them nicknames for a bit of fun. The evenings were a special time and a great bonding experience for us all.

Enjoying my first Vodka shot in what would
become one of our favorite restaurants.

We had an extra visitor one night when El, Bryn’s girlfriend (he was another of the other carers; Matt from the UK’s Brother) who happens to speak fluent Russian visited for a night. We had a few extra drinks with them and a lot of fun was had. Including El talking to a group of the ladies for us and asking them a few quick questions – very entertaining! Another evening I arrived back at the hotel after an evening out alone and introduced myself to an English couple that were taking photos in the lobby. They offered to buy me a beer and I dare not refuse. Richard and Heather were intriguing to talk with, he is an English Journolist and she is an Australian, they were visiting Russia before the big move back to Oz after many years abroad! I would suggest you take a look at their website to learn more about them: www.holdsworthwrites.co.uk. It was an enjoyable evening and again broadened my knowledge of the world, travelers as well as Russia. I was also able to share our story and the reason why I was in Russia for a month.

Having a beer with Richard & Heather Holdsworth
www.holdsworthwrites.co.uk

I was lucky enough to have two visits to Red Square; the first was with Aaron and Troy, Neil and Marrilyn. Anastasia arranged a driver to take us in, we had one hour with the boys in wheelchairs on the cobblestones so it was a quick and bumpy hour! The second time I took the Moscow Metro or the underground subway, with three others, Neil, Marilyn and Frank (antother carer). We attended the Bolshoi Ballet and then saw the Moscow Light Show and then saw Red Square by night in the fog and rain – an amazing atmosphere and a night I will never forget!

My first visit to Red Square -
St Basils in the background

Aaron and I in Red Square!

Aaron in Red Square!

Aaron, Neil, Troy & Marilyn in Red Square

 

Red Square by Night - just WOW!

La Sylphide - The Bolshoi Ballet

At the Bolshoi.

The Theater itself is amazing - such beautiful architecture

Amazed to be at The Bolshoi Ballet!
Listening to the Orchestra with Mum's ears xx

Russia was not a place I ever thought I would want to visit, it wasn’t on a bucket list – not that I have one, but I am very grateful and glad I had the opportunity to live, eat, travel and be a tourist for a few days as well as be involved in Aaron’s care at one of Moscow’s top private hospitals for a month. It was an experience I will never forget and there are stories in my memory that I will remember whenever I look back at the pictures of our time in Moscow.