Amen - I'm Alive!

21st October 2015

I posted a video the morning of Aaron’s 1 year Transplant Anniversary, the title and the words of the song I used described our situation almost perfectly “I Will Try to Fix You”….. I have done everything within my power (and tried some things that were not in my power), I have done everything I can think of to try to fix Aaron, to try to get the help he so desperately wants and needs....to try to stop the aggressive progression of his Primary Progressive MS. Our fight is not only against a debilitating disease that has stolen Aaron’s life, his son’s life and my life. It has stolen our hopes and our dreams and all our plans for the future. But against a system that is not in favor of those that are suffering.

Our fight to get Aaron follow up chemotherapy to support the HSCT he had in Russia has been far too much stress for our young family. Dr Fedorenko has assessed Aaron’s condition and insisted that he have follow up chemo to give the HSCT a chance to work…..to give Aaron a chance to join the 80% of successfully transplanted patients…. But no, Bureaucracy, Ethical Committees and Legal concerns have become big brick walls standing in the way of Aaron making his own life choices. NO ONE in Australia, the supposed ‘Lucky Country’ will prescribe and administer the required Chemotherapy – a treatment that is given to hundreds of people in hundreds of hospitals across Australia daily. It is a medication that is on the PBS that HAS and CAN be prescribed for MS…… why won’t any Doctor give Aaron the choice to make his own decisions in regards to what treatments he is prepared to try????? Where do I go now, what do I do? My head spins just thinking about it and my heart aches that after everything I have already done I cannot find a way to help my husband :(

On the day I posted for Aaron’s ‘1 year Transplant Anniversary’ we ventured out for our 1st ‘relaxing’ trip to the shopping centre since returning home almost a year ago. Aaron has not been comfortable or able to travel, things have been challenging beyond what I can describe. But as hard as the morning preparations were and the short trip in our ridiculously small car was we were excited for a relatively carefree day out together…… We started with a haircut for Aaron, visited Lowes for some comfortable clothing for him being that he is in the wheelchair 100% of the time now, and we headed into K-mart. We browsed the isles, joked around, looked at a few handy things we needed.

We were on our way out towards the registers when my phone rang. Aaron motioned that he was going ahead to look at something around the corner and I spoke to my Mum on the phone. It was a brief chat, I filled her in on what we were doing and mentioned we were about to go get lunch, only she didn’t hear that part, I then thought I said ‘Mum I don’t feel right’. Next thing I remember I was screaming out in pain, calling for Aaron and had no idea where I was or what had happened. Aaron filled in the gaps ….. he had continued around the corner and was looking at razors, he then heard a loud ‘thud’ and turned to see our trolley rolling towards him but no me…he turned the corner to see me lying on my back in a pool of blood. An RN had luckily been shopping at the same time and was not far behind me when I collapsed, she was right there with me as Aaron threw himself out of his wheelchair onto the ground to be with me. I was unconscious for a period; I had 2 convulsions and was bleeding from the head. The Paramedics cannot be faulted however the system let us down and we waited over 45 minutes for the Ambulance to arrive. All the while Aaron was watching me go in and out of consciousness and having fits. To say he was scared would be an understatement. I recall him calling out to me pleading me not to leave him …. I was just as scared as him!!

I presented to Hornsby Hospital Emergency, my head was stitched up (5 stitches and thankfully no shave) and I was put on monitors and had head scans, blood tests and was ‘watched’. Due to my young age and no pre-existing conditions or family history there were no initial concerns for heart condition or health and I was transferred to a ward on monitors. 

ICU

I can’t remember how long I was on the ward but I do recall feeling very sleepy and then everything faded and then went completely black. My heart stopped again (they now believe this was possibly the 3rd stop, the first being when I collapsed in K-mart). I woke up surrounded by people once again dazed and confused and not knowing quite where I was or what had happened. I was immediately transferred to ICU with more monitors and telemetry pads there were wires everywhere and two big electrically connected pads front and back of my chest …. I remember sitting up at one point and within seconds I had the worst shock of my life, like a pro footballer had run at me from behind and tackled me against a brick wall, it really hurt and I am sure I jumped a few feet off the bed as the pads shocked me….. The pads going off meant my heart had stopped again. After it happened I do kinda recall the lovely Dr mentioning as he was fitting them that if they were needed and did go off it would most probably really hurt…… well hell yep it did! I was then rushed straight into ICU high care and had an external pacemaker fitted as well as a pic line and more telemetry and monitoring pads. I was placed on the surgery wait list for a Permanent Pacemaker and monitored in ICU. It wasn’t a pleasant few days and it is still all a bit blurry to me. My amazing Mum rushed straight to K-mart as soon as she re-established contact with Aaron and my Father drove the 750km’s from his home to be with us. The temporary pacemaker kicked in once during its short stay in my heart, doing its job and keeping me here – 5 heart stopping moments is more than enough I’d say! 

ICU - Temporary Pacemaker

Surgery was not pleasant – they attempt to do pacemaker insertions under local anesthesia and you must stay completely still for the entire procedure (while they poke wires thru veins into your heart). I was in pain and concussed (and I still am) from my initial collapse and splitting my head. The compacting stress of the 72 hrs just past on top of the already stressed and high demands on me as a carer and in our ‘MS’ life…. plus the worry, concern and anxiety I was experiencing not being there for Aaron and Jake meant they had to put me under a general.

I spent the next 24 hrs being closely monitored and was then transferred to the ‘Cardiac Ward’, which is located on a mixed ward in a 30+ year old run down building. It included patients with dementia and other chronic illnesses and I was in a room with 1 other elderly female and two elderly males. It was not pleasant nor relaxing, I got very little rest or sleep. I was in pain, emotional, upset and at 42 had just had a pacemaker fitted and was now facing a lifetime of worries and heart concerns.... I had constant lights & noises, wandering elderly male patients trying to get into bed with me or convince me to sneak out with them for a smoke as well as the dear in the bed next to me having panic attacks requiring ventilation every few hours…. Discharge home the following Friday could not have come sooner!

Wandering Joe

I am home now with my boys, no better place to be! I am still recovering from my concussion and the pacemaker surgery; I am tired, sore and emotional. I am on restrictions and medications and need to follow up with more tests with my Cardiologist. This past few weeks/months/years have taken their toll on me physically and mentally and has given me time to stop, reassess and accept the help we so desperately need.

As I look back, the words of the music behind the first video I made as we were fundraising to get Aaron to Russia are even more prominent for myself as well as for Aaron 20 months later – “Amen I’m Alive”!!  https://videopress.com/v/wZ5htyk1

Our fight is far from over…. It is a daily fight for Aaron, his Primary Progressive MS is unforgiving but I cannot give up on him nor can I give up on his want, need & desire to try ANY and ALL ways he can to stop the progression of his horribly emancipating and disabling MS.

Takes more than my heart stopping 5 times to keep me down….. I just might need a little more help to keep up the fight this time round…….

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.