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News and Opinions about MS, Health & Disability

In Moscow for HSCT: Part 3 of Phoebe’s Story

on December 28, 2016
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Two weeks ago, I introduced you to Phoebe Scopes, the British woman who was the first international multiple sclerosis patient to receive hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in part 3, Phoebe takes us with her to the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow.
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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

Ian: When did you go?

Phoebe: On Sept. 17, 2012, my husband and I stood in arrivals at Moscow airport with two suitcases and a piece of paper with the address of Maximov hospital. As the first international patient to be assessed and treated, Dr. Fedorenko (Denis Fedorenko, MD) was waiting to meet us.

We made our way out to the airport car park where a group of taxi drivers stood waiting for their next job. Now about 6 p.m. on a September evening in Moscow, it was cold and the light was disappearing fast. I was extremely weak and felt completely vulnerable so, I was very grateful that my husband had his wits about him as he negotiated the fare and we got into the car.

The hour-long journey from the airport to the hospital felt like a white-knuckle ride. With his seat in an oddly semi-reclined position the driver used the roads as though he was going around a speed track and by the time we got to the crowded motorway, the driver along with other motorists, hopped on and off the hard shoulder to avoid queues.

I decided to pull the large hood of my top over my entire head before closing my eyes and minutes later, I was laughing nervously under my breath as I remembered the words of my neurologist. He was almost certain that HSCT would kill me, but treatment was now really looking like the better option here.

It was late evening by the time we arrived at Maximov hospital. This was a big hospital with a number of entrance gates around it that were now locked.

Remember that the driver did not speak English and neither of us could speak enough Russian to have a conversation, but he got out at one of the gates and pressed an intercom to speak to somebody, anybody on the other end. Getting back into the car, the driver made his way to one of the smaller wings of the hospital where the doctor and his then temporary assistant greeted us.

Ian: What was the quality of treatment and care received?

Phoebe: As mentioned earlier, the hospital was just at the beginning of their experience with international patients, so there were still some areas that were not yet confirmed, such as accommodation for carers. Dr. Fedorenko was not happy to leave my husband to check in to any one of the random hotels nearby, so invited him to stay in my room for the initial assessment period and if results were favorable for treatment, the doctor assured my husband that I would be well looked after if he needed to return to the U.K. during my isolation period of HSCT.

I grew more and more impressed with the quality of medical attention I received from the doctor and his dedicated team once on my own. The doctor spoke good English, but his staff did not speak any, yet we all found ways of communicating.

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Valuable symptom translation document for nurse and patient understanding. (Pic: Phoebe Scopes).

Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

Dr. Fedorenko worked tirelessly and wanted to make sure that in his absence, the nurses would know what was happening, how I was feeling, and whether they needed to call him. Nothing was too much trouble for the doctor and this put me completely at ease.Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

I didn’t know what to expect being on my own where no one else spoke English. I thought I would be very bored during treatment … sick and bored because reading books or magazines triggered headaches and fatigue and my dexterity was labored, making writing difficult. So, I decided to use my laptop to keep an account of my HSCT experience in isolation, in Moscow.

With my design background, I combined illustrations with daily entries, which kept me as busy as I needed to be and provided good distraction when things were tough. I called this “my diary in isolation.”

I soon got to know all the staff; the cleaners that left NO surface unattended and nurses working on the ward and I watched as they maintained the highest levels of care and dedication required when looking after seriously sick patients. I will never forget their kindness.

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Phoebe with catheter inserted, ready for stem cell collection. (Pic. Phoebe Scopes).

In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

A day later, the first thing I noticed was that my head “fog” and fatigue had lifted to leave behind a great deal of clarity and energy. My cognitive abilities also fully returned, allowing me to add simple numbers again, work out general problems in my head and multitask without the need to find a dark room or sleep afterward.In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

My vision was clearer, my balance was better and my limbs felt lighter. As a result of these physical improvements, I walked a few meters unaided.

Before I was finally discharged, I felt surprisingly energetic and remember thinking that this was not how someone that had just received chemotherapy should be feeling. The doctor, seeing my new-found energy, carefully reminded me that the cocktail of drugs such as antibiotics, steroids and pain killers taken during treatment, were still to an extent supporting me.

He advised me that once some of these drugs were reduced or removed completely, I would likely experience a turbulent period of extreme symptoms that would continue while I built a new immune system.

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

The day that my husband and I left the hospital to return home, Dr. Fedorenko waved us off as the taxi drove away. I remember how he stood watching the car until we were out of sight. I know that he was already worrying about how I would manage the flight home. I was wrapped up from head to toe for the journey and wore a surgical mask, and while I was looking forward to going home, I was strangely already missing my isolation room that had been my secure home for six weeks.

In part 4, we join Phoebe on her return home.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.


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