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:)

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:)

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:)

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:)

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

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:)

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:)

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:)

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:)

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:)

My Final and Controversial Prophecy

I actually touched on this a while back and I got quite a response.  I understand that people have very strong views and I welcome them.  If you have something I say I am more than happy to hear it.  But last time I did get a reasonably nasty and aggressive comment (which I deleted).  So if you wish to comment please keep it civilised.

Personally I understand and respect people have religious views when it comes to this subject but I didn't start this blog to debate theology so from my part, like I always intended, I am going to keep this medical.  And now for the controversial topic.  Embryonic stem cell transplantation and research.

It has been a hotly debated topic not only in medical and research circles but also in the media and politics as well as the wider community in general.  The research has for various reasons taken a long time to yield results.  There are a variety of reasons for this but I think the most simple reason is the complexity of what scientists are trying to achieve.  We're not baking muffins here.  This is the most cutting edge and complicated research ever undertaken.

However, it is moving forward, and recently the first person was treated with embryonic stem cells.  The following report demonstrates that we are probably on the precipice of something huge.  This happened over a year ago and the aim of the study was to test the safety of using Embryonic Stem Cells to treat macular degeneration.  The study showed that the procedure was not only safe but stopped further progression of the disease and even improved it.  Check out the links:-

http://scopeblog.stanford.edu/2012/01/23/first-results-of-human-embryonic-stem-cell-trials-for-blindness/
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60028-2/abstract

I believe that in the future research such as this will become more common place and as people see more of the success its popularity will grow.  And as this happens it will command more research and clinical dollars.

Lets face it, the possibilities are endless.  In the early stages the science could be used to grow new simple cells for people like the macula or skin for burn victims.  As the technology advances it could be used to regrow nerves for people with spinal trauma or even a new pancreas for diabetics or brain cells for Parkinson's and Alzheimer's.  Eventually we could see the growth of new limbs for amputees or entire organs eliminating the need for transplantations.THe possibilities are almost endless......  Stay well:)

CIDP Variants

Something I have said previously is that CIDP never seems to manifest itself in exactly the same way twice.  And it is pretty much the same for all Autoimmune Diseases.  The article in this link is really interesting and pretty much corroborates that.  Stay well:)

http://www.cidpusa.org/variants.html

Foiled by my Own Success

As you all know, if you have read my blog before, I went to Chicago last year to have a stem cell transplant for my CIDP.  And if you haven't noticed, it has worked even better than I expected.  Yesterday I swam over a kilometre at the local pool and today I cycled for an hour.  A year ago I simply wouldn't have had the balance to sit on a bike, let alone pedal, and get somewhere.

But what is it that has foiled me?  Well, when I was first diagnosed with CIDP one of the symptoms I had was that my socks always felt creased in my shoes.  It didn't hurt but it was really annoying.  I used to pull my socks up as far as they would go and and the symptoms would not subside.  I would take off my shoe to see if there was something wrong with the sole or I had something jammed in there, but always to no avail.

Eventually I just simply had to come to terms with the fact that it was a symptom of CIDP and it was not going to simply disappear.  So I decided to just ignore it.  Realistically it was the only option I had available to me and after time I least to accomplish this quite successfully.

Now thinking back with the benefit of hindsight I have to say that this symptom had disappeared after my HSCT, but in my successful attempts to ignore it, I hadn't noticed.  So when I noticed a crease in my left foot I simply decided to ignore it.  And that was my mistake.  I went all day successfully ignoring it.  I walked both kids to school.  I went for a bike ride and was gone for about an hour and a half.  I really had quite an active day.

Finally that evening the annoyance had turned to pain and I took my shoe off to have a look.  Not only was my sock creased up, it had managed to wrap itself up around a small stick.  I had even managed to ignore it for so long a blister had appeared on the side of my foot.   At this point I felt there was not much I could do but laugh.  A year ago I never would have done that much exercise to warrant a blister and before I got sick I would have checked straight away.  I guess I was foiled by my own success!  Stay well:)