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Tuesday, May 3, 2016

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:)

Friday, April 22, 2016

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:)

Monday, April 18, 2016

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:)

Friday, August 15, 2014

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:)

Thursday, July 31, 2014

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:)

Thursday, April 10, 2014

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:)

Sunday, March 23, 2014

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:-

Until next time, stay well:)