Movember update

Well I think some people are a little confused about Movember.  It is basically a charity fundraiser to support mens health.  Since men are c*#p at supporting their own health issues I think this is a truly inspired campaign.  For more info see:-

http://au.movember.com/programs

Anyway, I just thought I'd show you some of the new piccies I have of my mo.  My dad would be very pleased to know that since about the two week mark I have really found the mo a no no and on December 1st it will be a go go.

Anyway, for your owen personal amusement I will give you a couple of pictures.  Personally, I don't like the colour or the fact it is lighter at one side but anyway, here it is:)

Stay well:)

Medical Tourism

Recently in my own little world I joined up with a group of fellow patients and members of the medical and scientific community to talk about stem cell tourism.  It was both interesting and informative.  The debate could only go to further progress but there are a couple of points I want to make.

First, medical tourism is dangerous.  Normally when you seek medical attention in a western, developed society you can be confident that there are policies and procedures in place to safe guard patients.  When you go overseas you cannot be sure that you can be afforded the same assurances that you receive at home.  Even if you travel to another developed country you may find that the practices are a little different so you have to be on your guard.

After saying that though, if you haven't found the right answers at home looking overseas is a strong option.  You just have to be careful.  You are not going to be afforded the protections you receive at home so you have to be 100% responsible for what you undertake.  This means studying the procedure, the doctor in charge and key medical staff and the facility you are being treated in.  Even a little study into the host country and city and their culture is a good idea.

Unfortunately there are a lot of charlatans and snake oil salesmen out there who just want to peddle false hope preying on peoples desperation in order to make a fast buck.  If you don't do your homework it could be very easy to fall victim to these monsters.  It is also important to note that these underhanded tactics are not just the domain of overseas operators, they can also happen at home so practicing due diligence is important anywhere, just a little more so when you want to go overseas.  It is also important to recognise that you can also receive some of the best treatment in the most unlikely destinations.

The second point I want to make is that I really have a disliking to the name "Medical Tourism".  When I think of tourism I think of morally casual 20 something year olds tearing it up on a European Contiki tour.  Being a tourist is not something you feel like when you seek medical treatment overseas.  When I was receiving chemotherapy in North Western hospital in Chicago I guarantee you that the last word I would have used to describe myself is tourist.  Maybe we could call it international medicine?  Until next time, stay well:)

Movember update

Well, the first and most important decision I had to make all year!  What mo to grow?  In the end nobody made comment on my blog as to which one but I did get some comment on my Facebook page which was really no help as I had one vote for each of the choices.  So I had to deliberate on which one to grow and I have gone with the Eroll Flynn.

Now I have to remind you all to open up your wallets/purses etc and make a donation to a mighty fine cause as it is a great cause.  The link is below:-

http://au.movember.com/mospace/6659833

Also, thanks to my kids who have been the first to graciously raid their piggy banks to donate.

Until next time, 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:)

Lets lighten the mood

Well, my last post was of a very serious nature.  It was a topic of extreme importance and needed to be had.  But it is time to change the pace a little, add a bit of humour and hopefully do a bit of good for what I believe is a very noble cause.  Yes people, I'm have enrolled in Movember.  For the 30 days of November I will be cultivating a hairy upper lip to try and raise money and awareness for mens health issues.

Now I have already made the decision to grow a mo but the decision that is still baffling me is which mo to grow.  There are so many alternatives to what is best so I'm asking my faithful and diligent readers to assist me in my mo design.  Hear are a few ideas.....

Australian fast bowler

Never has there been a moustache that has struck so much fear into the hearts of English batsmen.  The mo and the red missile was a majestic combination which spearheaded the the Australian cricket teams dominance during the seventies.  For those who don't know about cricket the closest comparison would be Magnum PI.  This mo commanded respect and oozed testosterone.  The pinnacle of manliness.

Charlie Chaplain

Everyone has heard of Charlie Chaplain.  Arguably the first ever movie superstar.  He had a mo that fit snuggly under his nose and in the days of black and white films became an icon of the industry.  Unfortunately, his mo was made doubly famous by Adolf Hitler.  I'm going to call it the Charlie Chaplain though because he was a fun loving comedian who blessed the silver screen and the other was, well, Hitler.

Merv

Yes, Merv Hughes was an Australian fast bowler and yes he did have a mo.  But this was no ordinary mo.  This was a high octane, supercharged mo and as a result deserves it's own category.  Without doubt, the most famous mo in the history of cricket.  However, on the down side even the thought of growing this one sends shivers down my spine.  I don't think I could do it justice.  There are few things that would scare a Greek God.  Chuck Norris out for vengeance or the underside of a Scotsman's Kilt might do it, but so would Merv's mo.

Fu Mancuh

One of literatures most famous super villain and master assassin, Fu Manchu, created by Sax Rohmer is almost as well known for his mo as his evil deeds.  This mo makes a statement but on the downside it is long and I only have a month of growing, so I might have to leave this one to the Arch Nemesis of Denis Nayland Smith.

Errol Flynn

This mo quite simply oozes class, style and sophistication.  And didn't Tasmania's most famous export (well, until princess Mary of Denmark from Tasmania in Australia) do it justice.  The pencil thin, 'less is more' style of this mo sets it apart.  On the plus side, this mo would be achievable in a month but on the downside the question is could I carry it off like Errol Flynn.

Zach Galifianakis

This is not just a mo, it is the fully loaded facial hair ensemble, but it does include a mo so I could use it.  On the plus side it would require no manscaping so it would save time but it can be itchy so the question is could I handle growing it for a month?

WWII RAF fighter Ace

Tally ho old chap!  Let's show these Jerry pilots that there's no place for them in the skies above Old Blighty!  Whether this 1940's version of the handle bar moustache helped in the progression of this endeavour is anyones guess?  This mo has a personality all of its own but given some length is required means I probably won't be able to carry it off.  Also to complete the look I would have to smoke a pipe and this is a no go as I am very much anti smoking.

Well I think after my facial hair evaluation I have rounded the choice down to three types of mo.  As much as I like the Fu Manchu I think this would be impractical.  So the choices are the Australian Fast Bowler, the Zach Galifianakis or the Errol Flynn.  I need your help and input to decide so let me know what you think.

Stay well:)

Oh, and you can donate to the cause at my Movember page here.

http://au.movember.com/mospace/6659833

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:)

Tobacco Body

We all know that smoking is bad.  The amount of publicity anti smoking ads get and the fact that (at least here in Australia anyway) places that sell tobacco do not have tobacco brands and advertising everywhere but have really gross pictures of smoking related health issues and bold written warnings.

This website is a really cleaver and graphic way of explaining what smoking can do to harm you.  Take a look and stay well:)

Tobacco Body

The time is NOW!

I like to think I give advice on my blog that is useful and meaningful.  Some of it is obvious, some less so.  Some is important, some not.  This piece of advice is obvious but critically important.  Which is amazing as so many people choose to ignore it.

As with anything in life, procrastination is a metaphorical killer.  When it comes to your health it is a literal killer.  If you feel there is something wrong the worst thing you can do is ignore it.  To get it checked out is not going to hurt.  The most it could do simply cost you some time.  The best it could do is save your life.

A good example is a small cut on your foot.  Now normally you would clean it up, dress it and wait for it to heal.  However, if after that the would started to hurt more than expected or feel funny, ooze or looks red or starts going green, go and see the doctor ASAP.  If you catch it early you're probably resigned to a course of antibiotics then job done.  If you wait you might be looking at amputation.

This is just one example.  There are thousands and the rule remains the same for all of them.  Until next time, stay well:)

Scientific progress.

Now I get that there are ethical issues with this research but I, for one, find it really interesting and exciting.  This study was originally set up to simply study the safety embryonic stem cell transplants to treat macular degeneration as a primary focus.  A secondary objective was to test its efficacy.  Now one of the study participants was considered legally blind and now he can see well enough to drive a car!

Hopefully it won't be long until they can do the same with induced pluripotent stem cells so we can put the ethical debate to bed.  But for now, this will have to do.

Here is the article.

http://www.newscientist.com

Stay well:)

I found this very interesting.

I have always found the science of stem cells interesting.  Especially since I had a stem cell transplant.  So this article is really interesting and shows that adult stem cells can be coerced into forming different kinds of cells.  In this study they managed to get skin stem cells to form a brain type structure.  The clinical potential for this kind of research is massive.  From Parkinson's disease to brain injury the practical application could be endless.

However, this research is still completely resigned to the laboratory so it will still be many years until we see any real world benefit.  It is really important to note that if anyone is offering stem cell transplants to directly repair cells that are of a different origin to the stem cells used they are lying.  We simply do not have the technology for that kind of procedure yet.  But, I'm sure that it will happen one day.

Oh yeah, here is the article.

http://www.theaustralian.com.au/news/world/mini-brain-grown-from-human-stem-cells/story-fnb64oi6-1226706332448

Stay well:)

Vaccinations

My goodness me, it has been a while since my last post.  Apologies.  I don't have a really good excuse, I have just been lazy.  But hey, I'm writing now so good for me!

A great deal has been happening recently and for once it is not he who has been the focus of the medical interventions.  That honour goes to my son who broke his arm (which I blogged about last time) went to hospital for a minor dental procedure and managed to scrape all the skin off his index finger which then became infected and needed to be treated with antibiotics.  Aside from the dental procedure, which was purely cosmetic, the other two were just a nine year old boy being a nine year old boy.

After saying all that the doctors have not completely eluded me either as the juggernaut, which is my medical story rolls on.  I had blood work done recently which finally showed my blood levels had returned to normal.  This meant that it was time to revisit my immunisation regime and my oh my there are a lot of them.

Now for most HSCT patients this is nothing more than procedure but with a patient that had HSCT for an auto immune disease this process is much more complicated.  I will elaborate.

Auto immune diseases do not just happen.  Some people may have a genetic predisposition to contracting one of them but there is always an environmental trigger that starts the process.  There are many things that can be the trigger.  A virus or infection, a toxin, a medication or allergic reaction... The list is almost endless but one of the biggest suspects is a vaccine.

It is really quite logical.  A vaccine is designed to trigger an immune response that means if a person is exposed to the disease that has been vaccinated against, the persons immune system will attack the disease.  If the immune system misinterprets the vaccine it could end up causing an autoimmune (AID) disease.  The problem is most medical professionals will refute this link but there are sufferers of autoimmune diseases that swear black and blue that the vaccine was their "trigger".

Personally, I believe that a vaccination could be responsible for causing an AID.  But the question is whether the benefit of me having a vaccine is worth the risk of having a relapse.  Since I am fairly sure that a vaccine didn't trigger my AID in the first place I think that a vaccine won't do it to me this time.  However, I'm going to go pretty slowly with it just to be safe.  My program will be on and off for over a year.

Just so you know, this is a decision I have taken very seriously.  I let you all know how I go as I progress.  Until next time, stay well:)

Back in Emergency

Yes.  It happened again.  I ended up back in Emergency.  However, this time it wasn't me!  Yes, with all the CIDP, kidney stones and an immune system that copped the hugest pounding since I was born you would have thought that I would be the one fronting up for some urgent medical attention, but it wasn't.

So who was it that stole my Sunday from me and made me sit in the hospital for the best part of five hours?  Well it's probably best to start at beginning of Sunday morning when it was me that woke up feeling a little under the weather.  Not with kidney stones or anything but with that age old and much more common problem, the hangover.

Yes the night before I had tickets to the rugby international between the Wallabies and the Lions and after a resounding one point victory some celebrating was in order.  And I probably nudged the bar a little too far.

But since my pain was totally self inflicted I decided that I couldn't stay in bed all morning and got up to take my son to his football game (AFL this time).  As I had had a large night I decided it best not to drive and got my wife to drive us to the game.  She diligently dropped us off and went on to the shops.

And about five minutes into the game it happened.  My son took a tumble and broke his arm.  At that time there was not much I could do.  The football club were great and patched him up as good as any self respecting first aider would.  I called the wife to come back and drive us into the hospital and off we went.

Now I have visited many hospitals around Victoria (mainly as a patient) but this was a new one for me. The Royal Childrens Hospital.  And was was a lovely big shiny thing that Melbournians should be proud of.  There were little toy stations everywhere and the biggest fish tank I had ever seen outside of an aquarium.

We did not have to wait long before we were triaged and this was probably the only difference I saw in the actual patient treatment.  For an adult, they triage you, and then make you wait it out.  Here they game my son some pain relief straight away which I thought was great.  The amount of time I have spent in Emergency Rooms to see a doctor to write me up for some pain relief after being triaged is nasty.  But we still had to wait after that.  We finally got an X-ray and then the doctor could patch him up.

I wasn't actually present when the doctor manipulated his arm back into place.  We had our daughter with us and we didn't think it wise to expose her to the procedure so her and I explored the hospital whilst my wife tended to our son.  FYI, the children's hospital is way more fun than an adult hospital.

Anyway the procedure went well.  They loaded him up with laughing gas (nitrous oxide) and fentanyl and although he showed signs of being alert and somewhat uncomfortable during the procedure he said afterwards he must have been asleep because he can't remember a thing.  Thank goodness for the amnesiatic effects of the drugs.

Finally after another x-ray we got to take him home.  He looked pretty rotten after his ordeal and somewhat uncomfortable but at least he had been properly patched up.  We had a follow up on Friday and all was well.  They redid the cast and ordered him to wear it for another five weeks.  Hopefully it still recovers well.

Till next time, stay well:)  

Farewell Ms Gillard

If you are Australian and you don't live under a rock, you will have heard that we have a new change of leadership.  Julia Gillard was ousted in a very similar fashion to the way in which she took the job three years ago and in an ironic twist of fate the person that deposed her was the same person she deposed last time.  If you are one of my readers from overseas I can tell you that yes, it is as farcical as it sounds.

And I for one say 'Good riddance Ms Gillard'.  You have lied, cheated and done dodgy deals to stay in power (the same fashion in which you took it) and hopefully the country can now right itself.  Most of your policies have been pure pandering to minorities and non essential institutions in order to keep your job and when anybody attacked you you simply branded them a sexist misogynist which in most cases wasn't true, simply a way to deflect attention.  I for one have judged you as a politician and prime minister, not a woman.

But I digress.  This is a blog is about medical issues not a mechanism for me to vent my political frustrations so let me marry the two together.  For all her shortcomings Julia Gillard has one policy that I believe is the shining light of her term in office.  A policy that is as forward thinking and progressive as when Thomas Price (former Premier of South Australia and also my great great grandfather) gave women the right to vote in state elections in 1906.  I am of course referring to the National Disability Insurance Scheme (NDIS).

As a society we need to keep evolving and our social responsibility should forever be increasing.  Years ago every developed society developed their own health care system to look after the sick.  However, this was set up to nurse the sick and stop people from dying.  This initiative goes one step further and is aimed squarely at giving the chronically sick and disabled an improved quality of life through providing living and mobility aids, case working, carers assistance etc...

I believe this policy will set a benchmark for other developed countries to follow.  And don't confuse this with socialism, this is social responsibility and although it is expensive and paid for by the tax payer it is the right thing to do.  Some of these disabled people will even become more functional and become tax payers themselves which would ease the financial burden.  But this is not why we are doing this.  For people to have self esteem they need to feel like they are productive and and contributing members of society.  The NDIS will act as a vehicle for this.

For this reason Ms Gillard, as you pack your bags and vacate the Lodge I salute you.  However, I also send a message out to Kevin Rudd and all future leaders of our country.  This is just the beginning.  The journey which has now been started has a long way to travel.  Make sure you reach the destination.  If you need a hand I'll be happy to help:)

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 can stop you dead in your tracks?

Ok, I know, there are plenty of answers.  An anvil on the head road runner style could do it, but let's be a little serious.  What is orange, about five millimetres long and can stop you in you tracks?

If you are one of my fellow cystinuria friends you probably guessed it after reading the title.  If not and you're still struggling with the answer here is a picture of it.

Yes, if you haven't guessed already it is a kidney stone.  And although small and insignificant by size can cause a hell of a lot of pain and grief.  Basically, they grow in the kidney through a process of crystallisation.  Occasionally they fall out and cause a blockage arresting the natural flow of urine from the kidney to the bladder.  This causes pressure in the kidney which leads to excruciating pain.  

Eventually the stone passes into the bladder and then out into the open air during urination.  A question I get a lot is does that hurt.  Really, not nearly as much as when it blocks the kidney, if at all.  But the pain whilst the stone blocks the kidney is debilitating.  It can stop you dead in your tracks.  I have felt really quite productive this year too.  But a kidney stone will put a stop to that.  After I dosed myself up on pain killers I felt capable of nothing accept keeping my spot on the couch warm.

I think I have been lucky though.  Ever since my kidney op in April I have been passing a small stone every two to three weeks which is probably just residuals from the procedure but they have not caused me any problems.  I guess my luck just ran out.  The important thing is that I'm all better now.  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 

Am I cured?

It is the four letter "c" word that send shivers down the spine of any doctor or health care professional.  Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word.  Yes, I am talking about cure.

Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations.  As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment.  Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.

There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not.  After all, although it has been highly successful in most cases, it is not completely successful in all of them.  So, it is not a cure for everyone.  But I am a selfish patient so the question I will be asking is has it cured me?

Now I suffered from chronic inflammatory demyelinating polyneuropathy.  Chronic basically means for a long period of time.  Now I suffered from CIDP for a long period of time but am I still suffering?  A question I will visit later.

Inflammatory is basically referring to a biological action to a harmful stimuli.  In this case my immune system.  Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP.  A normal test should be less than five, but it can sometimes be elevated for obvious reasons.  For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP.  But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.

Thirdly, demyelinating.  Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb.  Meaning that the action is happening right now.  However, EMG results would show that this is not the case and my nerves are actually regrowing.  So the is no demyelinating process underway.

Polyneuropathy.  Poly means many. Neuro means nerves.  Pathy refers to disease.  Essentially, disease of many nerves.  If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.

In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves.  I am going to go with the latter and boldly say I am cured.  However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano.  The medical profession has a word for this too.  It's called remission.  Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind.  Until next time, stay well:)

Medical Tourism

A couple of weeks ago I had a phone interview with a lady from Monash university who was doing a study into medical tourism.  Finding out what motivated people to do such a thing and their personal feelings about making the decision.

My decision to embark on a trip to a foreign country over a year ago was one of (if not) the best decisions of my life.  I have my health back and still over time I am slowly getting better and better.  I also know other people who have benefitted from traveling for treatment and going overseas basically opens up a much wider scope of treatment options.  Hence, I am a big advocate of medical tourism.

BUT, a venture such as what I did or any form of medical tourism should only be undertaken with great caution.  There are a great many factors to consider that may effect getting treated properly.  Even when I went to the USA, which has the same language and a similar culture there were differences in attitude and procedure that were very different.

However, this is not the main reason to be cautious.  In your own country you are normally quite familiar with the ethics and safety of your medical system.  In most countries the medical field is very closely scrutinised.  In Australia it is impossible to practice medicine without a license and all hospitals and medical bodies are governed by an ethics committee.  Above them there are state and federal laws ensuring that medicine is practiced safely and ethically.  You go to another country you cannot be sure of this framework so it is important to do your homework.  One of the reasons I chose to go to Chicago was I felt very secure with the medical practices of both the country and the hospital.

Another issue that you need to be wary of is the snake oil salesman.  These disgusting vile creatures are the lowest of the low.  They basically offer services that won't work.  Praying on desperate individuals that are trying to rid themselves of illness is worthy of scum who are only one or two rungs from the bottom of societies filth.  It is really important be able to identify this and this can be achieved by researching the doctor, the medical institution and the country you are thinking of visiting to see if it is possible for the unscrupulous to fall through the cracks.

At the end of the day the most important thing is to make sure you are comfortable doing what you are doing.  If you are in a trial you must be prepared for the treatment to not work.  No matter what there is always going to be some risk.  As an individual you have to work out the cost and risk vs benefit.  If you think it is ok, then go for it.  Until next time, stay well:)

A big week

I had lots planned for last week.  I not only feel well enough now to be able to get off my BFA and do something, I actually feel driven to do so too.  Honestly, this is a new feeling for me.  I haven't felt like this in the best part of ten years and I had forgotten what is was like to feel motivated and driven.  It is amazing to think that when you are sick what effect it has on you that you don't even realise.

Anyway, my motivation took a dive when I started developing a cold on Monday.  But this was no time to crawl back under my stone.  I just had to suck it up and push on which I did.  Not travelling to Sydney and rescheduling all the meetings I had planned was going to be way too hard all things considered.

Anyway, I had my first meeting on Tuesday morning.  It was with representatives of the Steve Waugh Foundation and their goal is to help children with rare diseases.  They do this by financially assisting sufferers with treatment, medication and equipment.  I thought it might be a good fit for me as when I looked at setting up my own charity I was thinking about a treatment based charity that assisted patients finding effective treatments for their condition (starting with HSCT for auto immune diseases).

I have since found out that setting up a charity is ridiculously hard and the advice I received was to find another charity with a similar agenda and assist them from within their structure.  Personally, this meant that I could start doing what I wanted sooner and I would not have to waste any time with the administrative duties plus it would decrease my personal liability.  From where I stood the Steve Waugh Foundation was a good fit.

My meeting was very constructive however, it was not quite the right fit.  I'm sure if I keep on traveling down this path I will deal with them in the future but for now not so.  The Steve Waugh Foundation is set up to assist people financially.  I want to directly advocate for people and help find treatments for them so it is not a perfect match.  On the plus side I got some great contacts and was able to figure out my next step.

In the long run this is the direction I want to go in.  I believe that in the course of my education and career, coupled with my experience as a patient and trying to find solutions to my own problems I am ideally suited to advocate for others.  So, watch this space.  I have only just started.

On the other "professional" note I met with an old friend who has now become a neurologist.  Aside from being a great catchup on a personal note it was also an awesome opportunity to show a neurologist first hand how I have improved after HSCT.  Doctors can be your biggest advocate or your biggest spoiler and when it comes to a "patient" trying to tell them something they instantly become guarded.  Interestingly enough I have been called by doctors both an inspiration (thank you) and a charlatan.  I would take the latter personally if I didn't have a thick skin and the doctor wasn't a complete moron.

I also met with someone who could help me with my book.  The lady in question has spent a lifetime in publishing and to get some quality feedback was invaluable.  I honestly have to say that without her assistance I probably wouldn't finish the book.  I was really quite nervous when I went to see her.  I have never written a book before and I have to say that I was really worried that she was going to tell me it was rubbish.  Luckily, she said she really liked it and keep going.  Phew.  I once again could breathe and keep going with renewed confidence that I was doing a good job.

But above all the interesting things that happened whilst I was in Sydney there was one that stood out more than the rest.  When I first got sick with CIDP I was living in Sydney and I used to play indoor cricket with some friends.  After I got sick I had to stop playing as I couldn't run the length of the wicket any more.

When I had my HSCT last year one of my goals was to play cricket again.  So I hooked up with old side and went out for a game.  As nervy as it was I could once again run the wicket and although my crafty left arm overs had lost their swing and sting I could still put the ball in the right place to cause a few headaches.  And it did.  According to the score card I was the best performing member of my team!  Which doesn't say much, my team isn't very good but I'll take it anyway.  Oh and yes, we got severely hammered.  What counted for me though is that I played.  And I not only played but I was competitive.

I have attached the score card.  They have me down as playing as my nickname, Pommie.  Which isn't so bad.  At least I am not Gobble Gobble or Huggies.

Other than that the only thing to happen of not on my journey was that I caught up with another old university friend and we went and watched Star Trek.  What an awesome movie!  Until next time, stay well:)

A Big One

OK, I admit.  It has been a while since my last post.  But for good reason.  I have been really busy.  I have been making good headway with my book that I told you all about last time and I have been really busy with some other things too.  I would love to share them all with you but not now.  All in good time:)

Being busy has also given me a heap to write about and it is all good.  I am really excited about the remainder of this year so I will keep you posted.  But what to write about now?  Well, if I stuck I can always return to my favourite subject.  Me.  I'll give you a wrap of my latest kidney op.

But before then I have something else to share.  This is post number 400!  And I have been writing it for over three years now.  I hope you have all enjoyed reading.

Well, wrapping up my kidney surgery.  I got the stent out under local this time which wasn't great but to get an anaesthetist to come in would have meant another week.  I had to weigh up the pros and cons and decided that being awake for the procedure wasn't as bad as a week with a stent.  FYI, stents suck.

It all went quite well though.  I did have a small problem afterwards though.  I was having some pain and irritation in the down stairs department and I thought I might have a UTI, which is reasonably common after kidney surgery.  So I went to the doc and he agreed and put me on antibiotics.  A day later I passed a couple of small kidney stones that were probably remnants of my kidney surgery.

Well it's nice to be through it. Until next time, stay well:)

All Gone Well

Well, I must apologise.  I said I would write to let you all know how I went from my surgery within 48 hours.  It has now been three days since I woke up from my forced unconsciousness and as of yet I have failed to write anything.  If you were worried, I am sorry but the good news is that everything went well and I am well on the road to recovery.

There are a few things that I didn’t really like about the procedure though.  First, as I mentioned in an earlier post, I went to a hospital that I had never been to before and although I was perfectly happy with the hygiene, cleanliness and quality of the hospital from a medical point of view it was no where near the best I had been to.

It was all the little things.  Being a much older hospital all the corridors were very narrow.  100 years ago when the hospital was built the trolley beds were much narrower so to fit bed through was easier and didn’t require as much room.  These days the average bed is much wider and therefore requires more room.  So much so that two beds could not fit down one corridor.  This would be even more problematic if people left wheel chairs, IV poles etc down the way.  When I went for my morning walk (on the only morning I was there) it felt more like an obstacle course than a hospital ward.

Second, the plumbing.  There were no mixer taps so the temperature of the water was either hot or cold.  To get a mix you had to fill the sink up.  The other problem with the plumbing was that the old pipes made a lot of noise.

Third, the food.  Now hospitals, along with schools and airlines have very poor food but in recent times the food at all locations has markedly improved.  Unfortunately, not here.  But at least it was only one night.  Lastly, my biggest complaint.  There was no WiFi!!!!!

However, if I had to go back there I probably would as there is a great deal more to hospital treatment than the little fluffy extras to a hospital.  The staff were pretty good, and I am very comfortable with my doctor and this limits the number of available hospitals.  I guess that I could try and convince my urologist to change his list of hospitals but I think that would be a very hard get.

Thinking about my whole experience I do remember a post I wrote recently about how I found it hard to recall my three week hospital visit in Chicago.  In the middle of my hospital visit at the Freemasons I could recall that my experience was really similar to my last kidney stone outing but before I went in I recalled it as not nearly being so bad.  I think that the mind does play tricks on ones self in order to protect itself from mental trauma.  However, even in the middle of all of it I still think that the intervention is a small price to pay to be stone free.

There is one thing that I really find more annoying than others though, and that is urinary stents.  All the medical professionals say they don’t hurt.  I hate to burst their bubble, but they’re wrong.  You see, a stent basically ensures that swelling doesn’t seal the ureter blocking the kidney.  The problem is that although the stent will bypass potential swelling, it also bypasses a valve that prevents urine from washing back into the kidney.  So when pressure in the bladder increases (Such as when you urinate) urine floods back into the kidney causing pain.  And when you have as much scar tissue in your kidney as I do it hurts even more.  However, it is better than a blockage so it is a necessary evil and just means that I have to take some pain medication to counter which also comes with its own set of problems such as drowsiness etc…

Well, that is it for me.  The stent comes out on Tuesday which is only two days away.  Until then, stay wellJ

Back to Hospital

Well, I have just got back from a wonderful two week break in the Gold Coast with the family which was great.  However, I know I am firmly back to reality as tomorrow I am back to hospital to have my kidney stone removed.

Now I just want to make a few points here.  First, this is nothing to do with the stem cell transplant I had last year.  This is a completely different disorder.  The HSCT process has been and continues to be a complete success.  Second, it is nothing to really be worried about as I am not.  My fellow cystinurics would know that unfortunately this is routine which is a good and bad thing.  Bad because it is routine. Good because I know exactly what to expect and I have come to fully accept it as part of life.

It has been so routine for me that I have gone about my everyday life in such a way that I have all but forgotten about it.  It is now almost 7.00pm and I still haven't packed yet.  I really am simply concerned about what I am going to eat for my final meal (as I am nil by mouth from midnight) and finishing this blog.

Now some may consider this a no no, but I do it anyway and that is tonight I'll stay up really late so tomorrow I am tired.  Why?  Well I am going to sleep because of the anaesthetic tomorrow anyway and I'll probably doze all afternoon.  If I sleep well tonight I'll be awake alight tomorrow night as the anaesthetic all but wears off.  That is really boring as there is little to do during the middle of the night in hospital.

Well, feel free to wish me luck.  I'll be posting in the next 48 hours to let you know how I went.  Stay well:)

Happy Birthday to Me!!!!!!

Yes today is my birthday.  My brand new birthday!  And today I am 1.  Not 41.  Just 1.  Alright it's not my real birthday but my new birthday.  Exactly one year ago today I had my Stem Cell Transplant and patients and medical staff alike consider this your new birthday.  Now being one for me is really quite nice and is a great excuse for me to pretend I am young again.  I don't think it would really fly on official documentation but in social situations (other than going to the pub) I think it is pretty cool.

However, just like a real one year old the last twelve months have been a real learning experience for me.  Every single day I have to relearn exactly what I am capable of as it is still increasing everyday, just like a real one year old.  The only difference is I am much more aware of what is happening.

So what has changed over the last twelve months?  The list is almost endless.  There has been so much improvement.  I guess the first thing to go was the nerve pain.  Almost instantly it disappeared, but it did return when my nerves started regenerating.  Fortunately it was easily treated with minor surgery.

Other more notable improvements are that I have started swimming further and faster, my balance has improved so much I have been able to ride a bike and I have started running.  Maybe I should do a triathlon.  But it is the little things that make a world of difference.  I can now sleep through the night without getting up to go to the toilet and if I need the toilet I have no trouble getting there. I used to have to crawl.  I can easily walk up and down stairs, I can unscrew my own bottle tops, I can kick the footy with my son and dance with my daughter.    Standing up for long periods of time is not an issue any more and I can walk much further too.  All in all it's way better.

On a completely different note you have probably noticed (if you are a regular reader) I have changed the look and feel of my blog.  I would love your feedback on what you think.  It has been over three years since I first started writing this blog and since then I have chalked up nearly four hundred posts.  I have really loved the way it looked but change is always good.  I have also had feedback saying the black on white is hard to read.

On a last note I would also like to wish my fellow patient and stem cell transplant recipient Cory Smallegan a happy birthday as he had his transfusion on the same day as me.  To Bob and Wendy who were at the hospital as the same time as us I hope you too enjoy your birthdays next week and just remember, from now on under my new formula for age I'm older than you both;)

Well that's it from me today.  I hope you have enjoyed reading it as much as I have enjoyed writing it and I will continue to do so for a while yet.  Stay well:)