Damn we're good! Or are we?

Australia has a very good health system as do the two other countries (USA and UK) that I have been treated in.  But are any of them perfect?  Absolutely not!  In an industry quite as big as health perfection is impossible, especially when there are so many critics, but perfection is a noble goal and even if unattainable it will serve to make a health system as good as it can be.

But for the purposes of this blog I will focus on Australia and to narrow it down a little further, the field of medical research.  Now, Australia has an issue.  There are far more research projects than dollars which means that either some research simply does not get realised or the projects are scaled back to fit in with there available budget.  Neither is ideal and both happen with all too much regularity.

But the question then becomes who decides who gets funding and who doesn't.  In Australia this comes down to four main groups:-

1. Governments - The main source of medical research funding in Australia, both at federal and state level. The main body is the Nation Health and Medical Research Council (NHMRC)
2. Private donors - Although charitable donations are plentiful, In order to be able to make a choice as to whether a research project happens or not, the donation has to be quite sizeable.
3. Charities - Certain charities sponsor medical research and collate smaller donations to distribute them into something more meaningful.
4. Corporate - Will invest heavily in research but only if there is a buck to be made.  For example, big pharma.

One important group missing from this list is patients.  In other countries patients can fund their own treatment but not in Australia.  But this is a post for another time.  At the end of the day, the biggest contributor is the government, followed by charities.  The other two are also very hard to influence as they are autonomous in their decision making.

The next question is how does this money get allocated?  Well, the short answer is badly and I'm going to go back to the example of HSCT on this one.  Certain charitable organisations who are allegedly an authority in this area have stated that they are not interested in funding HSCT for multiple sclerosis and autoimmune diseases until stage 3 trials have been completed overseas.

WHAT!!!!!!  According to the Oxford English dictionary the definition of research is "The  systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions".  If you are simply going to follow in the footsteps of someone else work and do exactly what has already been done you are not going to establish facts because these facts have already been established.  You are not going to reach new conclusions because these conclusions have already been reached.  Essentially this is not research, this is redo. 

In the meantime, while we wait for the trials to be conducted overseas and then conduct our own research, sorry redo, which is at least a three to five year wait, Australians are dying and suffering.

In my next post I'll give you some insights into why we do it this way and more importantly, what we can do to make it better.  Until then, stay well:)

HSCT and Cystinuria

For those of you that don't know, I have had two main medical issues throughout my life.  CIDP, the problem for which I was successfully treated with HSCT back in 2012 and cystinuria.  A disease that means you get lots and lots of kidney stones.

Anyway, a few times I have been asked the question "Did HSCT also work for cystinuria too?"  A reasonable question ask but what is the answer?

The short answer is no.

The long answer in no.

Ok, ok that is a little facetious of me so I will elaborate.  When I was looking for new treatments for my ailments there were always two voices in my head.  First, the cold and logical part of my brain that asks for facts and questions the scientific theory.  The second is the voice driven by emotion.  A voice that clings to hope and is fuelled by desperation.

The question is, which one to listen to?  The answer is both.  When I first heard of HSCT I got very excited.  I was like a kid in a candy store that had just found the best chocolate bar in the world ever.  I then shared this news with my doctors who were much more sceptical.  Logic dictated that I should give up now as my doctors knew an awful lot more than I did.  But I was right to listen to my emotional side which told me to carry on.

However, I then had to listen to my logical side.  Ask myself questions like "What is the medical rationale behind this?" "What have the studies to date proven?" "What has come of the patients before me?"  In all three counts the answer was positive so I decided to go ahead and made what was absolutely the right decision.

But what has this to do with cystinuria?  The brain was ticking over at the time and I did ask myself "Could this help my cystinuria?"  My emotional brain wanted it to but my logical brain new the answer.  There was no medical or scientific rationale saying it would work.  There was absolutely no reason to think it so no studies had been done and nobody had been before me.  But still emotional Andy kept saying "but maybe..." I was going to have the treatment anyway

Unfortunately, logical Andy was right.  Since HSCT my CIDP has all but gone but I still have kidney stones.  In the last four years I have had six surgeries for stones and I'm sure there will be more to come.  So to my fellow cystinurics, unfortunately this is not the answer no matter how much we wish it was but I'd also say don't give up looking.  Keep listening to that emotional side that wants to find the answer.  There is a better treatment out there, dare I even say cure? And it will take both the logical and emotional voices in our heads to find it.

Stay well:)

Does HSCT work?

Firstly, to all my dedicated readers.  Sorry.  It has been way too long since I have posted.  I'll try to keep you more up to speed in the future.

But can you believe it has been four years since I had my life changing stem cell transplant in Chicago?  And yes! I really mean life changing.  If I have one regret it is that I don't have much video of me before my transplant so that I can compare it to now, so for the first part of this post I'll describe what I was like.

When I had my first evaluation with Dr Burt in February 2012 he asked me to stand up out of my chair without using my hands.  I did it... Just.  I had to shimmy along to the end of the chair so my centre of gravity was as directly above my feet as possible and with one mighty heave I pushed up.  Instinctively I tried to use my hands but was reminded not to but after about three seconds I was standing in a vertical position.

This was with no weights or hinderances either and I only just managed to achieve it.  Fast forward four years and after HSCT and a bit (ok a lot) of gym work I managed this:-

That is an 85 Kg deadlift and three reps to boot!  HSCT works people! HSCT works.  Stay well:)

Follow up wrap

Well it's all done and dusted in Chicago now.  A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt.  I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.

However, although I would have to classify the trip as a success I still feel a little disappointed.  Allow me to elaborate.  This is my second evaluation.  When I had the first one the results were nothing short of spectacular.  Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.

In this my second evaluation I was hoping that this steep upward curve would continue to climb.  I was expecting improvement albeit not as much but alas, there was none.  On the plus side, there was no degradation either.  But still, I couldn't help but be a little disappointed.  The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it.  The improvement plateaued and there it has remained.

It's not all bad though.  For the first six months post HSCT I had significant marked improvement.  This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.

This actually solves the biggest issue I had prior to HSCT which was the uncertainty.  I never knew what the next stage in my disease progression was going to be or when.  Now I know what to expect. I can move forward knowing what the future holds.

The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage.  Was it all worth it.  You Bet!  I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.

Until next time, stay well:)

Back in Chi Town

Can you believe it has been over two years since my transplant?  Neither can I.  But I'm back in the Windy city for a follow up and I have to say it is fantastic to be back.  Chicago is a fantastic city and I have many fond memories.  So far I have caught up with many old friends and seen Dr Burt.  I got the feeling he is really excited about how far his research has progressed.  He didn't tell me as such but I got the feeling that he is soon going to publish or finish some of his studies and will be announcing to the world some magnificent results.  But then again I may be wrong.

In terms of my follow up they were amazed at how well I was doing.  They had me fill out a bunch of disability scales and all the scores were either 1 or 0.  I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.

On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle.  It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction.  He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.

As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain.  And I mean it poured.  They turned the rain all the way up to eleven ;)  Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter.  I also have my NCV and EMG today.  I'll keep you posted on how that goes.

Stay well:)

Two years

I am pinching myself.  It has now been two years since I was in Chicago having my stem cells infused back into me.  Ironically, the day seemed a bit like a non-event.  After all the drugs and chemotherapy they put into me over my three week hospital stay the stem cell infusion seemed like just another hospital day.

What is important is the two years since then.  My recovery has been better than I ever imagined.  For 12 years I was not able to run.  Three months after my HSCT I could run again.  And the improvements have not stopped there.  The best things are I feel like I have become a better husband, father and person.  I can play with my kids, I can lift the groceries out of the car and I can walk down stairs without using the handrail.

But even today I noticed something I did that I hadn't been able to do six months ago or for the last 14 years for that fact.  Currently I'm holidaying on the Gold Coast with my family and today we were at White Water World.  Kids being kids had sprinted to the queue and were (im)patiently waiting by the time I got there.  The quickest way for me to get there was to duck under the railing.  Six months ago that would have been an effort but as always seems to happen, I ducked under the railing and didn't even realise it until it was over.  I then managed to carry up the floaty for my daughter and I by myself!

Anyway the last two years have been two of the best of my life and I'm going to take this opportunity to thank some really special people.  First and most importantly my friends and family who have supported me on this journey.  It is amazing to see the smiles on their faces when they notice my improvement.  A special thanks must go to my wife, my parents and my inlaws.  They say that family will always be there for you no matter what and that is so true.  To Dr Burt, Amy, Paula and all the other staff at North Western, the care I got was faultless and without your tireless effort I never would have been able to achieve my results.  Lastly to my new Reset friends and colleagues who are working tirelessly to see HSCT be available to all Australians suffering from sever autoimmune diseases and promote the treatment worldwide.

Until next time, stay well:)

MS societies - Why so anti HSCT?

It is a question that has puzzled many HSCT advocates, both inside and outside of the medical and patient community.  To those of us that have understood the process and talked to people who have gone through the procedure and benefitted from it can't understand.  Myself included.

Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random.  But a distinct lack of support is extremely puzzling.  I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.

And why should the MS societies point people in the right direction?  The answer is simple.  If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune.  The very least that could be done is for that body to recommend the places that are doing it right.

They should also fund the research.  I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body.  But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore.  The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment.  So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million.  Surely they could use a small portion of this to support the trials?

So why have MS societies and organisations been so anti HSCT?  I need to put in a few disclaimers here.  Firstly,  I don't know that all MS organisations are totally anti HSCT.  I apologise to any that support the treatment.  Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence.  One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.

Anyway here are my reasons/theories:-

1. They are getting their advice from the wrong source.  Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem.  MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists.  Neurologists simply do not understand HSCT.  It's a bit like getting an electrician to do your plumbing.  Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
2. They are entrenched deep in the pockets of the pharmaceutical companies.  Big pharma loves charitable support groups.  They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations.  Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap.  Big pharma like patients who need to pop an expensive pill every day for the rest of their life.  Currently, MS sufferers are a huge cash cow for them.  If an MS charity supports HSCT, big pharma might pull their funding.
3. MS societies are scared.  After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for.  Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community.  Much of what they do would be be made redundant.  But isn't that the way it should be?  Service the organisation and patients so well you're no longer needed?  I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever.  You finish your house and then find a new one to build.  If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
4. Early failures.  Yes, HSCT had been tried early without much success.  For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely".  And some people have.  Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients.  We cannot live in the past.  Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it.  Alas, the memory of these failures may have a long memory.

Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4.  There are ways we can do this.  The new organisation I am involved in is called Reset Australia.  Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases.  If you want to do so you can here:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Time to get serious!

I'm lucky.  Scratch that, I'm really lucky.  With all the people around the world that have a serious autoimmune disease I am one of the very few that have been fortunate enough to be the recipient of a hematopioetic (HSCT) stem cell transplant.  Out of all the people in the world that could benefit from this procedure the total number of people who have had it would be less that 1%.

And how does this make me feel?  A part of me feels a little guilty about this.  I mean, why me?  What makes me so special?  Why am I so different than anybody else who is in my boat?  Others may answer these questions for me and no matter how truthful or well meaning the answer may be I still don't feel any better for it.

But there is a positive.  I am extremely passionate about making sure that this procedure is available to everyone that needs it.  Now I am not Ban Ki-Moon or any member of the UN security council so to for me, launching a campaign with international appeal would be almost impossible.  However, I can focus on the country I know and love and maybe make a difference here and that is Australia.

What is really exciting is myself and a group of other HSCT survivors and concerned members of the community have a plan to accomplish this goal and it is time for me to share it with you.  People have already seen snippets of what we are trying to achieve on Facebook and GoFundMe but in order to reach certain media deadlines we needed to push things forward.  This post serves as a way to communicate exactly what our plan is.

HSCT is nothing new.  It has been used to treat certain cancers and haematological disorders since the 1960's.  It is only recently that the move to get it used for autoimmune diseases has started to gain some momentum.  However, in Australia we are sadly lacking.  The number of cases that we have done here is very little compared to what has happened overseas and that needs to change.

In order to do that the government needs proof that the procedure works before they put it on the medicare schedule.  The only way to do that is to get stage three trials done and all the positive media, petitions or even protests at the gates of government house will not change that.  The simple fact is that laws have been put in place to protect us and these laws actually make sense to me.  I'll give you a couple of reasons why.  First, have you ever heard of thalidomide?  It was once used to treat morning sickness in pregnant mothers and was widely prescribed without proper vetting by the medical and scientific community.  We later discovered that many of the mothers gave birth to physically deformed babies.  From that point on regulations were put in place to make sure it would never happen again.

Secondly, ever heard of a guy called Walter Freeman?  Walter Freeman was the main supporter of lobotomies in the USA.  He performed them on a range of people from children through to the elderly.  Although it did come under criticism he went and did it anyway.  It wasn't until later that we realised that it was about as stupid as aimlessly sticking pins in your brain (oh yeah, that's exactly what it was).  However, it only makes sense that we do what we can to make sure things like this don't happen again.

Given that the government is putting massive checks on new therapies and treatments how does anything really ever get done?  Well before government approval can happen safety and efficacy needs to be proven by completing stage 3 trials and Australia has to do the trials or at least be a part of an international effort.  The government could help by sponsoring these trials but even if they did it would take ages for the bureaucracy to get that through so if we're going to do the stage three trials we need to fund them ourselves.

So the next question is who will do the stage three trials?  Half the work is done.  Dr John Moore wants to do the trials, and he just needs the help.  The clock is also ticking because for us to get the biggest bang for our buck we need to do this with international cooperation.  This way we maximise our research and also help the international community but we need to do it now.  The rest of the world isn't going to wait for us so we have got to get into it.  The time for talk is over.  It is now time for action.  Get the stage 3 clinical trials done and HSCT will become widely available.

Given that, we are in the process of setting up an organisation to raise funds and support the trials.  This is now my main focus will be on this.  But don't worry, I'll keep you posted and forgive me if I keep hounding for money but to do the right thing ain't gonna be cheap so please donate at:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Wordle

In order to find a fun and creative way for my daughter to learn her spelling words they suggest that the kids in her class go on line and put them into Wordle.  As this was the first time she'd done it I gave her a hand and found out you can actually wordle a blog.

Yeah, you guessed it,  I wordled my blog and this is what I got.  I don't know what it means but I think it looks pretty cool.  This is what I got

Oh yeah, in case you didn't know we are trying to raise funds for an organisation to support HSCT in Australia.  Any donations would be greatly appreciated.  Please visit http://www.gofundme.com/72o5z0

Stay well:)

Donations Please

In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP).  I had to go to Chicago because at the time this treatment was unavailable in Australia.  Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be.  For the people that know me you know how remarkable and effective this treatment has been in giving me back my life.  If you don't know you can check out my video here:-

CIDP HSCT Story

HSCT is nothing new.  There are many haematological disorders and cancers that have been treated by HSCT since the 1960's.  For various reasons it has not been used for autoimmune diseases until recently.  And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.

The good news is that it is on the radar.  We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness.  As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.

The work we do here in Australia will also have international benefit.  The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.

In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it.  The first step for us is to finance the startup costs.  You can help do this by leaving a donation on the GoFundMe page linked below:-

GoFundMe

Any funds collected over and above the startup costs will go into promoting stage three trials.

Make no mistake, the outcome of these trials will have a significant impact on this country and the world.  It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.

Please give generously.  The thousands of people with severe autoimmune diseases will thank you for it.

Stay well:)

Myeloablative vs Non-myeloablative Revisited

This debate seems to be a regular topic on the forums for HSCT.  And with good reason.  If you are contemplating HSCT it is a question you should be asking yourself.  I blogged about this very topic a while ago and even though I'm happy with what I wrote I have more to add.  A link to my previous post is below:-

Myeloablative vs Non-myeloablative

So what is new?  As the debate rages on I have four points I wish to make:-

1. Since stage three trials for any HSCT are yet to be completed there is as yet no concrete proof of it's efficacy in any form.  However, the evidence is substantial and if you're like me you would believe that it is only a matter of time before we have proof.  My point is that if we still do not have concrete proof of the efficacy of HSCT in its entirety, how can we have proof of which protocol is better?
2. Right now I believe that which HSCT protocol a patient wants is a matter of personal preference.  BUT, if you can't get the one you want you are better off with the other rather than nothing as long as it is genuine HSCT and not one of these half baked shonky treatments from some scungy snake oil salesman.
3. This is a question that needs to be answered but not yet.  Once we have proof of the efficacy of HSCT (and we will) trials can be done to determine which is best.  It is also important to not that there are not simple two protocols for HSCT.  There are several protocols under both myeloablative and non-myeloablative treatments.  On top of that mix you can also throw in autologous (using your own stem cells) or allogenic (using donor stem cells).
4. After the dust has settled I believe there will be room for both types of treatment.  The decision will come down to which disease, the nature of the disease, the patients medical history, current health, lifestyle and the patients own preference.  In short, each case will require its own slightly varied protocol to maximise the outcome for the patient.

At the end of the day the important thing is that you are happy with all aspects of your treatment from the treating doctors and their facility to the protocol they use.  There are no right or wrong answers, just what you are most comfortable with.

Stay well:)

Time to take Action

It has been three months since my last post.  I apologise but I have been busy and where we are at is quite exciting.  I am almost two years post transplant now and although for a purely personal standpoint the treatment has been a resounding success there has been one big disappointment.  Even though there are thousands of people world wide who could benefit from this procedure the amount of people who have actually receive HSCT for autoimmune diseases is scarily few.

Something needs to be done to change this and not in 20 years time when the naysayers have either retired or passed away due to practicing medieval medical treatments on themselves, something needs to be done now.

Personally I feel a little guilty that I have received a transplant and others that could benefit have not so I want to do something about it.  This is not a new endeavour of mine, I have been thinking about this for a while now.  My initial research lead me to try and find another organisation that could help with this goal so I started looking.  I met with many charities, networks, trusts etc but for one reason or another I couldn't find the right fit.

So the next step is to set up an organisation.  There is a group of us that are really committed to seeing this happen with the end goal being to see HSCT being available to everyone.  We have a goal, we have a plan and we are committed.

The first step of our plan is to raise a small amount of funds in order to pay for the startup costs.  If you are interested in helping you can have a look at the GoFundMe page linked here:-

 http://www.gofundme.com/72o5z0

Any help that you can give us would be greatly appreciated.  After we have our startup funds we can concentrate on the stage 3 clinical trials to really advance the treatment.

Stay well:)

Great news!

It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases.  The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too.  It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.

BUT it is changing.  The trial at St Vincent's hospital in Sydney is proof of this.  They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient.  While this is great news it can also be used to highlight the short comings of the Australian system.

A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation.  Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT.  Now I decided to go for the treatment in Chicago.  Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.

Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia.  Pops is still waiting after two years, but at least the end is in sight.  He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant.  It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.

The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments.  Australia, you need to get your act together, stop procrastinating and start saving lives.

Until next time, stay well:)

Public perception?

Recently a friend and fellow HSCT survivor (in this case MS) alerted me this article about a very new trial that is happening in Sydney with HSCT for autoimmune diseases.  Firstly I just want to say that starting a treatment such as this in Sydney is fantastic for all Australians.  In an international arena our politicians are very good at lauding Australia as being one of the best but with HSCT for autoimmune diseases we have been caught dragging our feet.

But it is this article I want to focus on now.

http://www.theage.com.au/national/radical-stem-cell-trial-offers-hope-for-ms-sufferers-20131026-2w8n6.html

For those that don't know, The Age is a very popular and respected newspaper in Australia and while it is great that we have a trial here in Australia and it garnering publicity, I had huge problems with the inaccuracies of the article.  I will list them below:-

1. They make the procedure sound so dangerous.  Although it is a hard procedure to endure, it is relatively safe.  The Dr Burt trials in Chicago boast a safety record that is better than that of more conventional approved therapies and leaving the disease unchecked.
2. Use of the word "cancer".  Now cancer is nasty you'll get no argument from me there.  But the journalist makes it sounds like cancer is the worst thing, bar none, that you can suffer from by a long shot.  Well just like cancer, MS can also kill and the time in-between now and your final demise ain't pretty either.  And MS is not the only one.  There are thousands of non cancer diseases that are severely debilitating or killers too.
3. Quote from the article "If he survives long enough - that is, if a piece of dust doesn't get in his eye and spark a fatal infection......" Come On!!!!!!  That is just fear mongering.  Anyone can get an infection from dust in the eyes.  In fact it is less likely for a HSCT patient as they are kept in a sterile hospital ward, not a construction site.  And even if an infection does take hold, qualified staff are on hand to treat the patient.
4. The time table is all wrong.  The stage of neutropenia is about eight days.  Neutropenia is when there is no active immune blood cells in the body.  The article makes it feel like weeks and stem cell infusion occurs after a long period of neutropenia.  This is incorrect.  The stem cells are actually administered a couple of days before your white cell count reaches zero.
5. It is made to sound like only a few people have gone through the process.  This is not true.  Excluding Australia, I know of seven different facilities that are providing the service and that could well be more and Dr Burt in Chicago has completed over 500 for a range of autoimmune diseases and his trials have reached a stage 3 randomised phase.
6. The article also makes it feel like it is a procedure of last resort.  Simply not true.  HSCT is most successful and most effective if received early in the disease progression.

However, after thinking about it a bit more I was left wondering if this is not just a factually incorrect piece but a reflection of what society thinks of the procedure?  It is hard to judge as I am one of the few who swim very close to the centre of this small circle so to try and foster a perspective from the outside looking in is quite difficult.  So at the least I hope that the people that will read this post will keep an open mind about the procedure of which I will say I am a huge advocate of.  If you want to know why, just read some of my earlier posts.

Stay well:)

Tragedy

It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications.  I did not know Gabriella.  I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.

However, as an HSCT patient and advocate of the procedure it raises many questions.  Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them.  Essentially we need to tackle the proverbial elephant in the room.  My points are:-

• Is the procedure safe and is it worth the risk given the potential benefit?

Personally I feel that given the evidence that we now have available it is a relatively safe procedure.  With any medical procedure, from a simple blood test to open heart surgery there is a risk.  The fact that other facilities offering the procedure have not changed their practices at all says to me that is not the case.

• Is the institution in India to blame?

Honestly I can't answer this.  I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion.  However, the hospital has shut down its HSCT unit pending an investigation.  I can only think this is a good thing.  Carrying on in a cavalier fashion as if nothing had happened would be negligent. 

• Who else might be to blame?

Blame is such an ugly word.  Blame assumes that someone was at fault and that might not be the case at all.  It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy.  I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible.  So who is responsible?

Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself.  The person most responsible is the patient, in this case Gabriella.  "My Gosh" I hear you say.  "Wasn't she the victim?"  Well, yes she was.  But she was also the one who decided to go through with the procedure.  She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.

I know this because it was the thought process that I went through before I left for Chicago.  I had weighed up all the variable and outcomes I could think of and yes.  The fact I could die did play a part. Some people thought I might be mad.  That I was gambling with my life.  I could not have thought of it more differently.  Sure, there was a choice not to have the procedure.  But that choice involved still having CIDP.  Living with pain.  An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues.  When this is you situation, you start to think very differently about your situation.

In a similar way to me having brain surgery, I went into my transplant with my eyes wide open.  I am sure that Gabriella did too.  I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible.  I made the decision and I was prepared to take responsibility for whatever the outcome.  I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible.  The last thing I wanted was for people to go around blaming each other for my decision.  And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.

• Would it have stopped me having my transplant had this happened to prior to me going to Chicago?

It is a tough one to answer because I have the benefit of hindsight.  I think I would have still gone through with it.  I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.


It is never easy contracting a nasty auto immune disease like CIDP or MS.  We just have to make the best decisions that are available to us at the time.  I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was.  Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.

Stay well:)

The proof is in the..... Nerve conduction Studies

I have been sitting on these for a while and I apologise for not getting them out to you sooner.  They are my nerve conduction study test results which are the most significant tests available for the diagnosis of CIDP.  I do apologise because they are extremely hard to read.  Functional graphic design took one look at medicine then hitched a ride on the Saturn V into space and never returned.

The results are very confusing even for me but I think that the most telling test is the sensory nerves where in the pre-transplant test they couldn't even find a sensory nerve and in the post they could.  Also in the comments at the end the neurologist, Dr Allen, comments on improvement.  And that was only five months later!

Stay well:)

What to expect when you're expecting........ HSCT

Now if you have the time and the inclination you could pretty much get all the information you need from reading my previous posts from last year.  But given that most people are time poor and don't want to plough through the best part of a hundred posts I thought I'd condense it into one little post for you all to read.

Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT.  It is by no means generic and don't think that if you have HSCT your experience will be exactly the same.  Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.

So where do I start.  Well the beginning would be logical.  I contracted CIDP in 2000.  It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease.  I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.

It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression.  It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke."  There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting.  Really really badly.

Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life.  This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders.  It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful.  However, I always new 2006 was my low point and it still hung over me like the sword of Damocles.  I still had CIDP and I still had cystinuria.

I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt.  In his blog he wrote that Crohn's disease was an autoimmune disease.  I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?"  After all, CIDP is an inflammatory autoimmune disease too.

And what do you know, Dr Burt had a trial for CIDP too.  I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one.  I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through.  In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.

Now people have called me mad, stupid, brave and strong to have had this done.  I disagree with all of it.  I honestly thought I didn't have a choice.  Without the treatment my future didn't hold much for me.  A wheel chair? palliative care? Loss of bowel and bladder control? Death?  And living half a life in-between?  I did not feel brave or strong I felt like I was left with only one option.  Mad and stupid too?  I did my research.  I read the published studies and I talked to the transplant recipients who had gone before me.  Everything made sense.  If you had asked me I think I would have been mad not to have had it done.

So off I went to Chicago.  Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial.  Fortunately I was.  The other worrying thought I had was what if it didn't work.  I eventually reconciled this by telling myself that if I tried it and failed at least I would know.  If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years.  Just slowly watching myself get worse.

Strangely enough I knew that the procedure was going to be tough but that didn't bother me.  I was focussed on the goal and that kept me going.  I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself.  I did know what I was getting myself in to.

My Chicago trip was really in two halves.  The first half was all testing and appointments in the morning and the rest of the day to do as I pleased.  I can't lie, it was fun although I did miss my family.  I even managed to squeeze a trip into Washington DC to see some friends which was great fun.  But the second half was the serious side.

I survived the mobilisation process quite well.  The first round of chemo didn't hit me too hard.  I was slightly off my food but I did not feel nauseous.  However I did have a craving for chocolate milkshakes but others might just say that was normal for me.  The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.

Finally conditioning came around.  After five days of chemo it was safe to say I felt awful.  Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had.  Even with all the anti nausea drugs I still felt terrible.  This link to one of my posts will give you a snapshot of just how bad I felt.

http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html

Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home.  It was a really hard flight.  Even in business I felt restless and unwell.  If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic.  When I arrived back in Melbourne I could barely walk I was so tired.

After a month of rest and recuperation I started to feel like myself again.  Since then the progress has been slow and steady but undeniable.  In hindsight I am so glad I did it.  Finally I not only found a treatment that halted disease progression completely but sent it back the other way.  Since then I have been able to run, play cricket and go skiing.  But the best part is the little things.  I used to have to crawl to the bathroom in the middle of the night when I needed to go.  I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.

To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease.  As for me now, I have my life back.  I can look forward with confidence, not worry.  The glass used to be half empty, now it is half full.  Don't believe me check out my video.

http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html

Stay well:)

Moving Mountains

Hi peeps,

You all have to read this story and then go to the link in the post and show your disappointment.  No matter what country you live in, it all helps.  They were going to interview me as part of their story but I guess that isn't happening any more:(  It is a hugely important message and every message on the website counts.

http://www.movingmountains2013.com/could-two-minutes-potentially-change-someones-life/

Stay well:)

Dr Burt

Dr Burt is one of the best doctor I have ever had the pleasure of consulting with.  After all, he is the doctor responsible for my HSCT which has quite simply changed my life.  However, even after all the good work he has done there are still naysayers out there that are very sceptical of the process.  They should watch this video as it identifies the benefits of HSCT and answers most of the questions that the critics raise.  This is not me saying it.  This is one of the most qualified and forward thinking doctors in this field with an outstanding reputation to boot.  Hopefully getting this message out will allow the treatment to become much more available to more people and make a huge difference in the lives of many.

Enjoy and stay well:)

http://www.youtube.com/watch?v=5SmLUYomArI

http://www.youtube.com/watch?v=rOlk_-5QcDI

Chad Pfefer

What can I say.  I can relate to Chads story perfectly.  Every point he makes he articulates perfectly and I agree with all of them especially the one he makes about which doctor treats which disease.  Watch the videos to find out what he said.  Stay well:)

Here is Chad's speech 

Part 1 

http://www.youtube.com/watch?v=s3ohnu1w_Jg

Part 2 

http://www.youtube.com/watch?v=H5Mvx39g6tI

Part 3

http://www.youtube.com/watch?v=SmV1rfOtKhk