6-Month MRI Results from Russia!

I have finally been back to Moscow to get my follow-up MRI done and to get the results. I will talk about the results in more detail in a future post. Here is the GoFundMe page update that I gave:

As you all know, I have PPMS (Primary Progressive Multiple Sclerosis), had stem cell treatment (HSCT) six months ago in Russia (Moscow), and have returned for my follow-up MRI scan. Which I had today, and met with the doctor on the same day to discuss the results.

Oat Milk from the Local Shop

For those of you, like me, who have gone vegan, in an attempt to tackle their MS, you might want to know that the local shop to the clinic sells a couple of boat milks. Given the massive range of cartons of milk that they have on sale there, and given the language difficulties, trying to work out which one is non-this dairy can be quite a challenge!

Getting My MRI in Moscow

I am presently in Moscow, where I have just had my MRI to check whether the HSCT treatment has worked or not. Of course, I could have got to my MRI done in the UK. But, as some readers might recall, there was quite a significant difference between the MRI scanner in Winchester, back in the UK, and the one that they used prior to my treatment in Moscow. When I had my last MRI done in the UK, I think sometime in February, it registered three lesions on my brain and spinal cord. However, when I had my MRI scan prior to my treatment in March, in Moscow, they found eleven lesions. This seems to be because the machine in Moscow is a 3 Tesla machine whilst the one back at home was a 1.5T machine. Being twice the resolution in Moscow, the machine found more lesions on my brain and spinal cord. As a result, it would be rather silly of me not to get a like-for-like comparison by using the same machine to compare my before and after results.

MS Research - Getting in the News - I'll Give It a Try

Multiple sclerosis recently got on the national news – the BBC's 6 o'clock News. Caroline Wyatt, who has long suffered from multiple sclerosis, has been a BBC correspondent for some time. She contracted multiple sclerosis and struggled to be able to fulfil her job requirements. Recently, she undertook HSCT in Mexico. However, she had had multiple sclerosis since 1992. Whether it be as a result of suffering from the condition for so long, or some other variable, and although the treatment initially worked, she eventually returned to her previous state. That said, her brain fog is still much better than it was previously. Ostensibly, though, Wyatt has been a failed responder.

A Phased Return to Work - Pros and Cons

I have been at work for what must be three and a bit weeks, now. Work have been very supportive in allowing me a phased return, which means that I have only just worked myself up to my full hours. I am a teacher who works four days a week, Monday to Thursday. There is absolutely no doubt that I have found going back to work particularly difficult. I had been out of work since March, and what with the summer holidays, this meant going back to work at the beginning of September, some almost 6 months later. This was certainly a shock to the system.

Back to School! 4.5 Month Update

Sorry, it's been a long time. It's been something like 4 1/2 months since I returned from Russia, possibly more now as this has sat in my text editor for a week... I've had a really good recovery so far, although summer has offered its challenges with some pretty high temperatures here and there. Over the last couple of weeks, I have been getting a little anxious as going back to work for the new academic year has loomed on the horizon ever closer. Well, that horizon has finally arrived! I have been at work for a day and a half last week and all the mornings this week as I am currently undergoing a phased return whereby I slowly work up to my normal hours. 

Fatigue Management

Fatigue is a massive challenge for anyone with MS. The statistics for the number of people with MS who suffer with fatigue are very much understated, in my opinion. I'm yet to find an MS sufferer who doesn't suffer with fatigue. 

3.5 Month Update

I'm sorry that this has taken so long but I am on summer holidays at the moment, as a teacher, and this means I've been somewhat distracted! I have now been back a number of months and this is my video update that I did a couple of weeks ago. I'm thinking about running a video series on tips for fatigue as I have recently undertaken a six-week MS fatigue management course run by my local NHS MS team.

Update: A setback? Or summer heat?

I thought I would furnish you with another update. It is now the end of June and I returned from Moscow on 10th April. In this time, I have seen remarkable recovery. I believe that my walking and general coordination, as well as my strength, have returned to levels that were better than they were before I had treatment. My recovery has been as good as can have been expected.

2-Month Update

It seems to have been ages since I last did an update. It's now been two months since I have returned from Moscow and my HSCT treatment. Things are going really well and I am recovering along the same trajectory as I was when I last gave an update. I believe I am physically better than I was before I left for my treatment, which is absolutely fantastic. I am cognitively about the same. All things said, I can only take heart from the level of my recovery. My hair looks like it is white or very fair... Here is a video discussing everything:

Third Blood Test Results - Week 5-6

Here are the results to my third blood test. These are a little bit late as I had the test done at the beginning of last week. They came in at about the 5 1/2 to 6 week mark. Broadly speaking, I was happy with the results, although also I felt I could have made a little more progress perhaps. My platelets seem to have gone into abnormal again. All my liver and kidney functions appear to be on point and the only abnormal stats were in my full blood count.

Here is the video that details the results. Let me know what you think in the comments below.

Interview about HSCT on Naked Diner Podcast

Here is an interview I gave the other week for the Naked Diner podcast. It is the third time I have been on, and each time has been great - massive thanks to them.

Excuse the opening expletives - I didn't realise I was on air at that time! And the false finish at the end! Here it is:

White Hair

It's white! White, I  tell you! It's odd and it's probably quite normal - I need to look into it. My hair is slowly growing back, but I think it is doing so in places I didn't properly lose it. My theory is that I lost hair in patches on my face and quite consistently across my head, but I didn't fully lose much of it. Where I shaved my face and had my head shaved, and where I didn't lose the hair, it just stopped growing. Where I lost it, I think it is still absent in the follicles.

One Month+ Update

It's just over a month since I came back from my HSCT treatment for my primary progressive multiple sclerosis, in Moscow. As many of you will know, my treatment went absolutely fantastically, and my recovery has continued that trajectory. I feel really good about everything and I feel really good in and of myself. This, of course, can lead to complacency and can be dangerous giving that my body and immune system may not be ready for normality. 

But I feel normal. 

A Book for You...

This is a nudge to you guys for birthday presents for any kids up to, say, 14/15 for you. You know you want to...

A book that I have written with one of my ex-colleagues called The Curse of the Maya: A Truth-Seekers' Story is now published and available to buy. It was something that I finished, as a project, when I was receiving my treatment in Moscow. It gave me time to finalize some of the details and editing before getting it out.

Details from the Loom site are:

Johnny Pearce and Andy Loneragan are embarking on a project for 9-year-olds through to 13-year-olds or so. In UK terms, this is Year 5 through to Year 7 and beyond. Heck, even adults should enjoy this one. The book fits in within the loose remit of Loom in being fiction from a skeptical or philosophical perspective.

Let’s set the scene of the book.

Finally! NICE Accepts Drug for PPMS

It has long been the case that people with primary progressive multiple sclerosis are the Forgotten relatives of people with relapsing-remitting multiple sclerosis. In the UK, on the NHS, we have no drugs available to sufferers of PPMS governing body (called NICE) last year refused to pay for the drug, ocrelizumab. After negotiations between NHS England and Roche, which manufactures it under the name Ocrevus, the NHS finally bartered the price down to an acceptable level and have just accepted it for PPMS sufferers.

100% Correlation of Glandular Fever/Kissing Disease to MS

It has long been known that glandular fever or the kissing disease, more medically known as Epstein-Barr Virus (EBV), has something very important to do with the development of multiple sclerosis. My MS nurse was recently telling me that an awful lot of effort and money has been put into researching this link. It seems that 100% of people who have had glandular fever (EBV) have developed multiple sclerosis. Obviously, this is only a tiny proportion of people who have contracted glandular fever, but the finding is exceptionally important. What this essentially means is that if we can develop a vaccine for glandular fever, then we can effectively wipe out multiple sclerosis. This is great news! Here is a video that lays out some details:

I'm not sure what the study is referred to here, or who the research it is being interviewed, but I have found a very recent (2019) piece of research that shows that 100% of Cypriot MS sufferers investigated had had EBV:

Out & About Video

Here is the video to accompany my previous post about getting out and about. Hopefully, it is useful to you. If you have any comments or questions, please put them below in the comments section!

Getting Out and About

I suppose it must be coming up to a month since I have returned from Russia. Things are going really well, although some of my recent stats are a little bit up and down. Generally, I feel good about my recovery and very good about my treatment in Russia. It can be easy to get a little complacent and take things for granted. I know that I'm probably taking risks that perhaps I shouldn't do because I feel quite normal in some of my characteristics, both physical and cognitive. (Some of my characteristics are obviously very much still in the realm of multiple sclerosis!).

My Second Blood/Liver/Kidney Tests

Here are the second blood results I have had from blood taken at the beginning of last week (Monday - it's Sunday now). There are some interesting changes that I will talk briefly about.

Discussing My Liver & Kidney Results, & My GP Appointment

Having already shown you my results in the previous post, I thought I would do a video talking about it as well. As I keep saying, I'm really looking forward to comparing my results from the second blood test that I had comma taken yesterday.

It's interesting to note that the only place I am wearing my face masks at the moment is when I go to the doctor's surgery. I'm going to my local convenience store without wearing them (I walk there as it is probably a 6 minute walk and that is part of my exercise regime in walking there and back). I am hopefully going to watch my twin boys play football this weekend where I'll stand with the parents and watch the game without a mask. I think this is a sign of the progress in my recovery as my immunity appears to be only marginally below where it should be. I guess we'll see for sure on my second blood test results.

Anyway, here's the video:

My Blood Results AND My Liver/Kidney Function Results

I told you in previous posts that, when I had my blood tests done, they only tested for my haematology. Because I could only find, on my medical records published online, my blood results and not my liver and kidney function results, I thought that they hadn't tested for them. I sent an email through to my GP and spoke as well to my MS nurse to request that these tests were done. I met with my GP on Monday this week and he told me that the tests had been done but they just hadn't been uploaded online. Well, they are there now. So here are all of my results for you to check out. I will talk about them a little bit at the end.

First Meeting with MS Nurse Post-HSCT

A couple of days ago, I had my first meeting with my MS nurse. I was really interested to see how this meeting would go, because it was the first one since having my treatment. The meeting couldn't have gone any better. I shared all my information with my MS nurse and it actually ended up being a meeting with two nurses. Due to the fact that I have had HSCT, there has obviously been some talk in the local area as far as multiple sclerosis care is concerned. I have become a little bit of a guinea pig and people are following my journey with some interest. 

I am the first case of HSCT that my MS nurse has experience and she is very interested in the whole process, largely because she knows that she will meet more patients who will want to follow this journey both privately and on the NHS. One of my local hospitals, in Southampton, will be starting HSCT treatment for multiple sclerosis this year. Unfortunately for people suffering with primary progressive multiple sclerosis, it will only be given to people with relapsing-remitting multiple sclerosis. But, it's a start.

My Walking

One of the things I am obviously interested in is looking at each of my symptoms of MS and seeing if they, straight after the HSCT treatment, improve or worsen. One of the most prevalent aspects for me to consider is my walking. At EDSS 3.5 (though the Russian neurologist diagnosed me as EDSS at 4), my walking has always been okay, though my range had been getting smaller before my treatment. I could walk my boys to school okay at a range of just over 1000m, but by the end of the walk back, I was weaving a lot and was pretty much done. I would collapse into the sofa back at home.

Now, after treatment, I feel considerably weaker. As I keep mentioning, this is a mixture of the deconditioning of my muscles as well as weakness from the treatment. It is certainly important for me to keep exercising to build up my muscles and capabilities. I do about 20 minutes or more of yoga every day and the short walk that you will see in the video that I am increasing marginally each day.

Blood Test Analysis

I recently received my first blood test results back, which were interesting to get back. In the UK, you can access your patient records online so I was able to access and see my results online. There wasn't too much I couldn't understand (with a little help from Google), so I looked them up and down and here they are! I do have to say that they di not test for half the things I requested so will be an email to the surgery...

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Final GoFundMe Appeal Update: Thanking Fundraisers

As anyone who has been involved in private HSCT treatment provision knows, fundraising is one of the most important aspects because without it you wouldn't get any treatment in the first place. Therefore, it is really important to keep your donors updated and is, in the final stages, to update them and thank them once and for all.

Here is the final update that I gave to my donors from the GoFundMe network. I keep it together because towards the end I do almost lose it and get a little bit emotional.

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Cleanliness Tips and Blood Tests

Getting back from the clinic raises its own risks and requirements. Things can happen when you least expect them, as can be seen by the fact that my HSCT buddy, Frank, ended up in hospital back in Norway soon after he returned. I am not sure whether it was an infection, a false alarm or whatnot, but the take-away lesson is that you can't take any risks or take things for granted.

Your house is your castle for the next however long. Personally, I go for a walk once or twice a day, extending it each time, to get my legs up to speed, but don't really leave the house much at all elsewise. Therefore, the house is the main place to control in a way that suits my present needs.

In this video, I talk a little about managing those risks at home and prepare to go out to get my blood tested at my local GP's surgery.

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Home Cleanliness and Visits

In this video, I give you a few hints and tips about what I do for cleanliness at home and preparation for people visiting. Of course, as with all of my advice and videos, it is merely what I do and there may well be better ways of doing things; you might think that some of the things that I do are not good enough for you or are too much for you to do. It all just depends on where you are and where you sit on that continuum of taking things really casually to being really and completely fastidious  about the hygiene around you.

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Urine and Temperature Tests

There are two things that I do every day: check my urine and temperature. I do this to make sure that I have no infection. This can manifest itself in my urine as well as in a change in temperature. Of course, the most important thing for people with very low immunity is that we don't get infections. As they say, any slight temperature, and get yourself to A&E. There's no messing around with these kinds of things!

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Back Home: Tiredness, Discharge Notes, Urine Tests, Russian MRI

I continue my reflections about leaving the clinic in this video. But I start by wondering whether my hair would continue to fall out. From a position a week or so later from the recording of this video, I don't seem to have lost any more hair - I don't think.

Tiredness is something that has affected me, unsurprisingly, after returning home. I have been lucky enough to be able to email through my blood test requirements and GP appointment requirements to my GP's surgery and they have booked all the things I have needed, which is fab. Anywho, here is the video for you:

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Back at Home - Reflections on Leaving

Leaving somewhere you have a tried being and where you have spent 30 days is always going to be an interesting psychological phenomenon. The clinic becomes a really important part of your life, as do the people around you: your fellow patients, the nurses, Anastasia, and Dr Fedorenko. 

First and foremost, you are in a safe environment: if there is ever any problem, you merely press a button and there is someone there to help you. As soon as you are out of that clinic, that safety net disappears. Suddenly, everywhere is its risk. And this includes your own home. Here are my initial thoughts on leaving the clinic and coping with life at home:

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Leaving the Clinic - the Final Morning

On the evening of 9th April, my partner Helen was due to arrive in Moscow and to come to the clinic to visit me. After 30 days without seeing her in the flesh, this was something I was really looking forward to. However, as fate would have it, her flight from London was cancelled and she had to get an evening flight that meant that she arrived at the hotel Vega at 05:30 on the morning of April 10th. She managed to couple of hours in bed for having to get herself together and come and visit me in the clinic.

When she did arrive, dressed in all her blue clinical overrobes, it was still fantastic to see her. She was able to look around my room and see it for real having seen it so often on the videos that I have been recording. After a short wait and look around the clinic, we finally got to see fellow Dr Fedorenko in his office for his final debrief.

And Finally: The Catheter Removal

It's like family, your catheter. More than that, it becomes a part of you. Quite literally. It's one of the first things that is done to you and, although it changes at one point, is consistently part of you throughout your whole treatment. It is used exceptionally often for taking blood samples and for giving you infusions. Your neck catheter is arguably the most practicably important aspect of your treatment!

It was a sad moment to see it go. Here is the extraction in all its glory:

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My Update to my School

I am a school teacher back in the UK and was given time off for my treatment. At different times, I was giving updates to the staff and indeed to my class back at home. Below is a video of an update I gave to the staff at my school. There is probably no need for you to watch this as you will have seen all the other videos in the previous blog posts because there is nothing new or different here. I am merely giving the same sort of updates and the same information and stats that I have given in previous videos. I've just put it here in case you, as a reader and potential HSCTer, are someone in a similar situation who wants ideas about how to give updates back to work colleagues or friends and family at home. So here it is:

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My Nightmare of Paying for the Treatment - Sending Money to HK

Due to the fact that the clinic is in Russia, and no one particularly likes paying Russia large sums of money, this can cause problems. The political situation means that banking and Russia are not good bedfellows. The way the clinic get round this is to have a holding account out in Hong Kong. They have a multicurrency account that can take Euros as well as US dollars. It appears, for the European patients at least, that they prefer being paid in Euros. This means, as someone from the UK, that I have two get €45,000 out to a bank in Hong Kong, paying an electronics company as a beneficiary. This electronics company bank account is the holding account for the clinic in Russia and they can then transfer that money back to their accounts in Moscow.

My Final infusions & Some Rituximab

Now I am at the final stages of the treatments that I'll be getting at the clinic in Russia. After isolation finishes, there are some final infusions to be taken as well as a dose of rituximab whose job, I believe, is to kill off those last immune cells that might clone themselves and come back to haunt you.

In the video below, I continue to talk about my stats amongst other things. One things, which I'll talk about in the next blog post, that I mentioned in the video is transferring money out to the bank account in Hong Kong to pay for the treatment. This can be quite a headache and, as mentioned, I will explain why.

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Out of Isolation

Today was an important day because isolation ended for me. I was in and out into the world of other humans – into the communal area outside of my door to meet with some of my other clinic friends. It was good to see Frank in person and see how he got on. It was just nice to be out, even though I strangely enjoyed being in isolation!

In this video, I also continue to look at the statistics of my haemoglobin, leucocytes and platelets. I also talk about the things that I can use again, such as a toothbrush and toothpaste and other simple things we take for granted in life.

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Almost out of Iso; Hair Loss; More Stats!

So here I am almost out of isolation and things are progressing nicely. My stats are superstar stats and are following exactly did trajectory that the doctors were wanting. Dr Federenko was particularly happy with where my bloods and my leukocytes were. I couldn't have been happier with my physiological progress.

As well as speaking about stats, I get to show you what hair loss looks like, especially when cleaning your head in the way that you are supposed to. Get ready for another update!

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An Example of a GoFundMe/Fundraising Update Video

Personally, I used to GoFundMe to help raise funds for my appeal. I was happy with their services. I know they take a cut but the cut was worth it for what I was able to do with them. One of the things that is important for such fundraising sites is to consistently update those very generous people who donated to your appeal. The video below is an update I did for my donors. Previously, I had written updates to them but this was the first video one I had done and I think video updates are much better for them and give a much greater connection to the people you are communicating with.

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Isolation day 7; Things to Bring to the Clinic!

One more day in isolation and you wouldn't think I'd have that much to talk about. Well, you wouldn't know me very well then… Here, I give you some more stats and information about isolation but then devote quite a lot of time to telling you useful things that you need to bring with you to the clinic. Hopefully, this is an interesting as well as informative video for you!

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Isolation Day 6

Here we advance along to basics of isolation and I get to show you some charts and figures. Everyone likes to look at stats, right? I hear, I talk about all things isolation, including how I am physically and mentally feeling as runners the things I'm doing such as continuing to take my supplements, contacting my family back at home and all the usual things that you would expect people to do was stuck in isolation in a clinic.

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Isolation

Isolation. That word. Those 10 days.

Hey, it's not that bad. You get to hang around the same four walls for 10 days but you get used to it. In fact, I quite enjoyed it. I had enough technology and enough things to keep me entertained. Isolation wasn't a problem. It whizzed past and before I knew it it was over. You get your nurses barging in and giving you injections and infusions and this and that. So that's all pretty normal. And you get to talk to your loved ones and family back at home on social media and Skype and whatnot. And you can even talk to your fellow isolationists and patients at the clinic through social media. So, really, it's not that bad.

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Our Own Stem Cell Birthday

As mentioned previously, your stem cell birthday is a really important time for patients to come to terms with the fact that they have a new body in some sense. This is the beginning of the end of multiple sclerosis for many of the patients in some form or another. Therefore, it is an incredibly important day for them. Everyone is given a badge with an iris on that signifies new life, is given a hug by Dr Fedorenko and pours a little bit of liquid nitrogen onto the floor as part of the ritual. Dr Fedorenko always gives an impassioned speech. Considering he must give this almost every day or at least three or four times a week to separate patients, it is amazing that he still has the same passion and love for what he does and what he says.

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Stem Cell Reinfusion

Arguably, the most demanding time at the treatment is the stem cell reinfusion. This is the crucial period where they are putting back the stem cells that they previously harvested before you have your four days of chemotherapy. The fewer bags they harvest, the easier the reinfusion is. I had 3 bags harvested and so had three bags to put back in…

A full bag of stem cells, freshly thawed...

Details on Food & Shop; Chemo Is Over! A Day Off!

I seemed to get through chemo without any problems at all. That said, on the last day, I did feel motionless and I found swallowing a little bit more difficult, which felt a little bit like heartburn. I have to admit, my tea drinking entities felt a little bit on my final day of chemotherapy!

After the four days of chemotherapy finishes, you get a day off for your body to recover a little.

The video details the food at the clinic and what you can expect and when you can expect it. As a quick rundown, you get four meals a day and when you are in isolation one of those meals changes to two baked apples and a piece of meat. It sounds weird but it's actually just what you want! Anyway, this video details the food situation.

Update for the Local Newspaper

As I mentioned in a previous post, my local newspaper, The Portsmouth News, ran an article to help with my appeal. I thought it would be a nice thing to give them a video update halfway through my treatments. Indeed, they ran an update article for me to coincide with this video.

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The second article that they ran was also another lovely piece. Here is the article:

My Physical Status in Chemo, Pills, Urinary Catheters and More!

Today is the fourth day of chemotherapy and I tell you how I am feeling in the video. Whilst my body is weakening, much of this can be put down to the decommissioning of my muscles through not doing nearly enough exercise by being confined to a small room every day! I explain a little bit about the process of chemotherapy again, including the regimen of pills and infusions. One thing that is worth mentioning as part of the chemotherapy is the sheer volume of infusions that you have to take into your body. As a result, that liquid needs to come out. I found it easier, especially considering sleep disruption, to get a urinary catheter, which are explained in the video.

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A Reminder of my Journey to Russia and getting HSCT

This video is a reminder of my journey to Russia and my decision to take on the treatment of HSCT. As someone with Primary Progressive Multiple Sclerosis, this was a big decision for me and one not taken lightly.

This story takes you through deciding whether to do HSCT at all, and then whether to take it on through the NHS or to go privately to someone like Russia. Hopefully, the video will explain it all:

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Chemotherapy Time!

After you have your stem cells extracted, and this can take anywhere between one and three days (it took three days for me), you enter chemotherapy time. Chemotherapy is a four-day process in the Russian clinic and you receive quite a few litres of infusions throughout the day you get a main infusion in the morning full of quite a number of bags of liquid before receiving a pair of bags of infusions twice more throughout the day. Check the video out for more details:

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Interview with Sarah about Isolation

Isolation is obviously a crucial part of the whole treatment process. It takes anywhere around 10 days and you have to stay within the four walls of your room without leaving it at all. People can deliver food and drink into your room if you make special requests by social media to friends on the outside. But these are specially cleaned down and given antibacterial wipeage so that they are safe to you to consume.

This is an interview that I can gave to Sarah who had been through isolation before us. We were interested in what she experienced and how she found it. Obviously, she is speaking from behind a face mask so you might need to turn the volume up for this one.

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The Haircut

One of the seminal moments of the whole treatment is getting your hair cut off. Whether you are a man or a woman (unless you are already balls) this is an unforgettable moment. The idea for me was to make it as fun as possible.

Here are the fruits of the nurse's labour:

Stem Cell Extraction Machine Explained; and a Documentary Team!

The video below, Julianne (Frank's girlfriend – he is my HSCT buddy from next door) explains how the machine that extracts send stem cells from your blood works. 

Although she is not a qualified member of the HSCT team, she is a fish biologist and so therefore knows her stuff… I think… Perhaps…

Anyway, she does a pretty good job of explaining exactly how the machine that is extracting my stem cells during the video works.

A Stem Cell Birthday Party

Stem cell birthday parties are massively important parts of the treatment process for patients. They signify a really important day – the day when you essentially have your old immune system replaced with a new one. In some sense, you are born anew.

Here I have an example of a stem cell birthday for some other patients. However, the audio isn't very good so you might not be able to pick up everything that is being said. My own stem cell birthday celebration comes later in this process in the number of blog posts' time. This should just give you a flavour. Notice that, at the end, part of the ritual is to pour liquid nitrogen on the floor. This is the same liquid nitrogen that your own stem cells are brought up in as they are frozen during your chemotherapy stage. More on this process in later blog posts.

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Stem Cell Evacuation!

You've essentially had your stem cells stimulated for four days in the hope that your bones will have produced enough stem cells for the team to harvest. It works out that they need about 2 million stem cells per kilogram of body weight. In my case, I was just over 80 kg. That's a lot of stem cells.

They wheel in a machine and plug it in next to you and which connects to your catheter in your neck. It takes blood out of your system, uses centrifugal force to separate what it needs and then sends blood back into your system. As far as I understand it, it's not a complete circuit that is continually taking blood out of one tube and putting it back in another. It takes blood out of one tube in your catheter and puts it back in that same tube once it gets out of it what it needs.

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Neck Catheter

The one piece of equipment that will stay with you for your entire time during your HSCT treatment is the net catheter. Yes, it might change side and they do change over from a two tube catheter to three tube one at one point. However, the catheter will become simply part of you. And what a useful appendage it is. When they come to take blood tests from you in the morning, and you're barely awake, they just plug in these tubes into your neck and take the blood straight from your jugular. No needles into your arms, just a simple tube straight into your jugular vein!

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More pictures below:

An Interview with a Patient's Mother and a Meal out!

Quite often, the forgotten people in this whole equation are the family members around the patient. It's easy to get wrapped up in the hall treatment and think that everything is about yourself as the patient. But these things have ramifications and effects on other people. It's the families who bear the brunt of the pressures and stresses that embarking on the HSCT journey can bring on.

It's because of this that I thought it would be important to interview a mother of one of the patients (Sarah). Marilyn, she's a Kiwi Australian, so Maz or Mazza, did a great job to put up with my incessant questioning. Here she is in all her glory with her son-in-law Chris helping out at the side.

An Interview with some HSCT Buddies

I'm not averse to giving interviews in the normal blogging that I usually to (I am a geek and I normally blog about philosophy). I thought it would be a good idea to speak to some other HSCT friends about their experiences. Frank was in the room next to me and was receiving HSCT himself whilst Chris was a partner of Sarah who was receiving HSCT and he had done a bunch of research himself. He is a funt of good knowledge.

Patients receiving HSCT is that everyone is always at a different stage. You will get your one or two partners in crime who are aligned with your own treatment. For example, I had Frank and Julie, another Norwegian, who were my HSCT buddies but everyone else in the clinic was that a different stage.

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Four Days of Stem Cell Stimulation

So after getting accepted on the treatment as a whole, the first proper thing that they need to do is to make sure that you are producing enough stem cells so that they can harvest them. To do this, they infuse your body with steroids to make sure that it is ready for the shock of stimulating the stem cells and they inject you with drugs that will encourage parts of your body, such as your pelvis and your sternum, to produce a greater number of stem cells that they can produce for the doctors to harvest. Hopefully, this video will make sense of that!

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Pretest Results!

Whilst we were busy looking around Moscow and enjoying ourselves on our day off, the doctors and nurses were busy checking out our tests to make sure that there wasn't anything too unusual that presented risks to our HSCT treatment. Here is a video detailing what was found out.

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Pretests Done; Day Off!

So with the first few days been filled up with pretests to make sure that you are ready for the treatment, you finally get a day off. It's still nerve-wracking wondering whether you have passed those tests and that your journey all the way out to Moscow isn't wasted, and that they won't send you home with your tail between your legs because you have some risk that you weren't aware of.

With those tests out on the way, you get a day off early in your treatment cycle. This is great because you are still fairly able in body and mind to be able to go and see Moscow. There is a chap called Alexey who has now made it his job to sort things out from patients in the clinic, one of those things being day trips around Moscow. I was lucky enough to have a neighbour in the next room called Frank from Norway, who at the time and his girlfriend Julianne with him, and we took a day trip together.

Check out the video where I explain everything and you get to see some of my experiences from my day-off in Moscow!

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The Ukrainian restaurant (there's a chain of them) was well worth visiting,

Definitely not vodka. Definitely water.

The Pre-Tests

Once you settle down and you've sorted your room and belongings out, things start happening. The first few days of your treatment out in Russia will concern pretests. They've got a lot sharper on testing people who go out there to make sure that they don't have the risk factors that might cause problems for them during treatment. They would rather send people home who were high at risk for some complication than treat them with HSCT and take those risks.

I was given ECGs, x-rays, ultrasounds, blood tests and all sorts... Check out the video.

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The Room

It's important to let you know, in this case, what sort of room you will spend the next 30 days in, will be like. This is where I start to show you my video diaries, of which I have many…

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All the rooms might look quite small, they provide everything you need and they quickly become your home. I now remember my room fondly.

Getting There

Getting to London Heathrow is nothing unusual or special. I did it alone because I am still able enough with a low enough EDSS score, meaning that I could get to the clinic in Moscow on my own without too much trouble. From England, when organising your treatment with Anastasia, you can book your transport to and from the airport, both to the hotel (if that is where you are staying first of all) or to the clinic itself. I went straight from the airport to the clinic as I was on my own and didn't feel the need to spend any time at the other hotels nearby.

So someone met me at the airport and drove me straight to the clinic, helping me with my bags up to the right floor and to meet Anastasia and to be welcomed to my new home, and to my new adventure.

The whole journey already felt organised and I felt well prepared. Nothing felt like it was being chanced at all.

I was here. I was safe. And I was well up for it.

What to pack?

If you have checked all the HSCT Facebook groups before, you will know there are innumerable suggestions and lists of what to pack to take to whatever the clinic you have chosen to go to. For what it's worth, this is my suggestion for what to pack. Let me remind you, however, that I am a man who is currently fairly mobile and who has an EDSS score of about 3.5 to 4.This will obviously affect the sorts of things that I am going to have taken.

I will tell you more detail about these sections at the bottom.

Technology:

Mobile Phone

Laptop

Half-decent WebCam 

Headphones with mic

Visas

Russia doesn't make itself an easy holiday destination, that's for sure. Getting a visa for your time in Russia is a necessary evil and something I will explain and advise you on this blog entry.

You have to get a visa to visit Russia and these come in 90-day Business types or 30-day Tourist types. Your treatment in Russia will last 30 days at most. The only thing to consider is whether you think something might go wrong with your treatment might have to stay in Russia more than 30 days. This was my thinking and so I decided to get a 90-day visa. Just in case.

The Case for HSCT - My Rant

This is my rant. Buckle yourselves in.

So, as many of you will know, I have recently been diagnosed with Primary Progressive Multiple Sclerosis. This is the type of multiple sclerosis that only 15% of sufferers have and for which, on the NHS, there is little or no treatment. What I’m about to say might play merry havoc with people’s psychology is because, after all, people are funny things. They make decisions and stick with them through thick and thin irrespective of what evidence or what other people might say. I fully expect some pushback to what I say and I certainly don’t want to sound like some kind of evangelical. I’m just trying to explain why I made the decisions I did and why I am deeply frustrated at the health care systems all around the world who do not support this treatment, or who appear to finally be coming on board.

Useful HSCT Links - Facebook etc.

Here is a nonexhaustive set of links for useful HSCT sites and information. Some of the Facebook groups you will have to answer questions to join because they are closed groups. I advise you join all the groups that you can and garner as much information as you possibly can from these different groups and the experts who work tirelessly to help people therein.

• UK HSCT for MS & Autoimmune Diseases
• Russia HSCT for MS & Autoimmune Diseases
• HSCT Hematopoietic Stem Cell Transplant - MS & Autoimmune Diseases
• AIMS (Auto Immune & Multiple Sclerosis) - charity set up to help people in the UK achieve HSCT
• Mexico HSCT for MS & Autoimmune Diseases
• HSCT Fundraising
• HSCT for PPMS
• Life after HSCT for Autoimmune (Patient ONLY Post HSCT Support Chat)

And of course:

• HCST Russia - the clinic itself!

Fundraising Done, Now What?

So with fundraising now successfully done, what would be things that we needed to consider before embarking on our journey to Russia?

Work.

I am a teacher in a school and I needed to make sure that school were on my side in terms of the treatment I was going for and the legal aspects of time off work and pay. Luckily for me, the council that I work for entitles me to 6 months full pay in such situations. This was a massive burden off my back. However, I needed to communicate this with them and to explain my condition, as well as the proposed treatment. I probably didn't do this soon enough and would advise having this conversation at the earliest possible opportunity to prepare your employers as best as possible so that they can put things in place for you.

What We Did For Fundraising

People feel uncomfortable talking about fundraising let alone doing it. Here is, hopefully, a pretty detailed rundown of exactly what we did to raise money for the appeal:

One of the first things we did was to set up a Facebook group with a number of friends who could help coordinate activities and fundraising events. The whole point is that someone with multiple sclerosis is not in the best place to go about generating £40,000 worth of income when they have a condition to deal with, fatigue, physical disability and cognitive deficits. So, therefore, friends and family are exceptionally important for helping to do the fundraising.

The Choice: Russia; The Reality: Fundraising Like Hell

Choices made: Russia. The standard at the clinic, the brilliance of the team, the data and success rates, everything… I was 100% sure that Russia was the correct choice.

Of course, the problem is that this is was that I had to raise €45,000. The bigger problem was that it was Christmas and I had set myself 12th March for my treatment. That gave me three months to raise the money!

I didn't have €45,000. I think I had maybe €17 left over from a trip to Paris some months previously...

London vs Russia

One of the biggest challenges that Russia suffers from is that the clinic is in… Russia. People the world over have biases against places like Russia: are the hospitals falling apart, is the paint peeling off the walls, arestaff good enough, is it still in the Cold War era…?

Seeking HSCT as treatment involves hitting Facebook hard. There are so many excellent, so many wonderful Facebook groups that deal with different aspects of HSCT on that social media that the information available to potential candidates is almost overwhelming. There are files and photos, this and that information sheets and everything that you can ask for. Literally, everything you could ask for. You can ask a questions to one of these forums and have a host of answers within half an hour completely satisfying requirements.

The Decision - Where to have it?

The decision to opt for HSCT was reached. There was no hanging around. It had to be done. The first question was where it should be done. These were the options:

1. On the NHS - probably in London.
2. Russia
3. Mexico
4. Another country (Singapore, India, Thailand etc.)

The fourth option was out because the infection rates and mortality rates for those countries appeared to be lagging behind the other countries on the list. Several newer countries have taken on this technology, and as is the case with many places that take on new technology, and they don't have the experience under their belt to be able to produce the best results possible.