The Air and Space Museum

This place is awesome.  I went to Washington DC yesterday, and whilst everyone was busy today I took myself off to the Air and Space Museum at the Smithsonian. And it was great.  They have so many great aeroplanes and space vehicles there.  I was in awe.  To me these kind of artefacts don't just show a piece of history, they show off the tenacity of the dreamers, the dedication off the scientists and engineers and the sheer raw steel of the pilots.

Each exhibit tells an amazing story.  I just sit in wonderment of what humankind has been able to do and the knowledge we have been able to gain in order to accomplish what we have.  If only we could focus that kind of dedication into curing some medical diseases.  Please enjoy the video I took.  Stay well:)

How much does it cost?

In this case just five minutes.  I have really been putting the hammer down recently on my blog about my CIDP and the really exciting advances being made in stem cell research.  But I have two really nasty rare diseases that effect me.  The other one is cystinuria and I must admit, I haven't been giving it the time it deserves recently.

And there are a few reasons for this.  FIrst, I am right in the middle of the throws of my very own stem cell transplant that I hope will be the answer.  As this is happening I am constantly researching this treatment, which gives me a great deal to write about.

Second, this procedure could be the answer to autoimmune diseases in general, and if not, it has been a giant leap in the right direction.  What is happening is really exciting and I believe that even if it doesn't work for me, the fact that it has worked for many others is proof enough that the procedure is definitely worth while.

But while cystinuria is taking a back seat it is certainly not forgotten.  If you ask me which one is worse the genuine answer is they are probable about the same.  They are very different which makes it hard to compare.  Most days I'd say CIDP by a nose because it is in your face everyday from the moment you brush your teeth in the morning, to the time you put your pyjamas on at night.  But when I'm symptomatic with a stone, cystinuria is way worse.  The pain, nausea, discomfort, lack of sleep makes it almost unbearable.

And I'm sure cystinuria will have its day in the sun.  The research is happening.  Scientists are making giant leaps forward every year with genetic research.  Maybe the answer will come from stem cells, maybe not.  I don't know.  What I do know is that eventually the answer will come, the question is when?

So what can cystinurics do now.  I believe that there are many factors that increase the priority of which disease gets priority and the research dollars, but the main two are prevalence and severity.  The nastiest diseases and the most common ones normally get the attention but there are other smaller factors.  Now, we cannot change the severity of the disease.  It is what it is.  And so is the prevalence.  But we can change the perception of prevalence.

And I don't mean by dishonest or underhanded means.  I mean as cystinurics we should make sure we put up our hands and are counted.  Not doing so is like being a political activist who doesn't vote.  At the end of the day you can scream and yell as loud as you want you still won't be heard.

So how can cystinurics be heard.  It is simple, sign up to the cystinuria registry.  The link is below:-

http://medicine.med.nyu.edu/nephrology/research/current/join+the+cystinuria+registry

I must admit, I have been slack in doing so, I have only just done it.  But I have done it and that is what matters.  Doing so will not only provide doctors, researchers and scientists with valuable information, it will also give us a voice.  If you have cystinuria do this to help yourself plus everyone else with cystinuria.  Until next time, stay well:)

Why so hard?

I made a new Facebook friend this week.  A lady from Canberra who had an HSCT for MS about a year ago.  We have chatted briefly, and I find these conversations with all patient in this or similar situations both inspiring and informative.  But we both had a big whinge about one thing.  Why is it so hard to get into a program for a stem cell transplant?  In Australia the medical fraternity turns its nose up at the procedure which I think is sad.  In this post I will give reasons why I believe this to be the case, and why I believe these reasons to be unfounded.  I will also give some tips on what we as patients can do to combat this.

First I'd like to tell you a story that my new Facebook friend told me.  The patient slated to be the next HSCT recipient after her (who also suffered from  MS) found that bureaucracy and procedure was effectively stone walling her from receiving the treatment.  The hospital that she was going to had ethical concerns and had to run it past their ethics committee. After a year and marked deterioration she finally got the nod.  Unfortunately, a week before she was due to start treatment she passed away.  So congratulations to the administrators and bureaucrats in the hospital concerned for killing the patient.  At least you did it ethically.  (For all the pen pushing paperwork loving hospital administrators out there that are slightly detached from the real world, that was sarcasm)  THe other really annoying thing about the wait and feet dragging is that the evidence shows that the earlier one get an HSCT, the more positive the outcome, which brings me on to my first point:-

• With my current crop of doctors in Australia, they probably wouldn't even consider an HSCT until I was in a wheel chair and needed a ventilator.  Now, as I've said before, your body can repair damaged cells, but it cannot replace destroyed ones.  If I was completely wheel chair bound my nerves would probably be completely destroyed and unrecoverable.  My meagre improvement would inspire no confidence in the doctors to try again with other patients.  Hey, I'm willing to give it a go, and I don't want to wait I want it now while I still have a chance at a reasonable recovery.

• It is perceived as dangerous.  Well, so is going skiing, eating raw fish, driving a car or smoking and we can do any of those things when ever we like.  It is not a full blown bone marrow transplant which requires far more chemo and radiation therapy and also normally a donor which adds much more danger to the process.  The most common used protocol for HSCT for autoimmune disease carries a mortality rate of <1%.  Besides, shouldn't that be my decision?  I get that I might die, even worse I could end up in a wheel chair in constant pain and needing too be fed through a tube for the rest of my life.  Still, I am willing to take the risk.

• It's not embryonic stem cells.  Embryonic stem cell research is wrapped in controversy, and although I am a supporter, I fully understand why.  But that is a debate for another time.  HSCT has nothing to do with embryonics.  The process is autologous.  Meaning the donor and recipient are the same person, so unless we go back in time 37 odd years and harvest my stem cells when I was but a wee blastocyst, the ethical implications simply do not apply.  Adult stem cells are a completely different ball game.

• The snake oil salesmen ruin it for everyone.  There are dozens of bogus clinics and individuals out there peddling the promise of stem cells for nothing more than their own financial gain.  Check out the following link.  CBS snake oil.  One of the problems with this piece is that it does not refer in any way shape or form to the bonafide doctors and hospitals, such as doctor Burt, that are genuinely using the technology to help people.  The technology is out there, but it needs to be used right.  The snake oil salesmen ruin it for everyone.

• Alright, let me be a conspiracy theorist here for a second.  Big pharmaceuticals don't want this technology to come to light.  Why?  It is much more profitable to have sick people needing a bucket load of drugs everyday rather than being "cured" by a one time treatment and not needing any more drugs.  People with autoimmune diseases take a lot of expensive medications, many of which are ineffective.  But the pharmaceutical companies prefer this because it is much more profitable, and by identifying the snake oil salesmen, and discrediting them to discredit the whole stem cell movement.  The CBS piece I linked to above says that there is no known stem cell therapy for MS. This simply isn't true.  Check this article out.  To me, the CBS piece stinks of the pharmaceutical companies trying to discredit the stem cell movement through the back door.

So as patients how can we promote stem cell treatments?  First, challenge your doctor(s).  You may feel like you're banging your head against a brick wall, but if enough people are persistent enough the doctors will not be able to ignore it.  They will have to do their research and learn the truth about stem cells.

Second, do your research.  There are genuine bonafide institutions out there offering legitimate stem cell solutions.  I believe 100% that Dr Burt's studies at North Western is one of them.  However, you need to keep an open mind so you can see through the charlatans.  Try to keep an open mind.  When you are sick it is easy to cling to anyone that is offering hope.  The key is to weed out those focusing on false hope and those offering real hope.  Use your common sense.  Chances are if the clinic is situated on a shopping strip between a subway and a seven eleven, it is probably bogus.  Look for genuine studies published in reputable medical publications to corroborate the institution you are looking at.

I could ramble on about this subject for ages, so I'll think I will stop there.  Until next time, stay well:)

Apollo

If you real want to see something that really makes me go wow, this is it.  Whilst on my trip to the Museum of Science and Industry I took this very short video.  It is the Apollo VIII capsule and it was the home to three men for eight days and inside would have been about as big as a small car.  There might be a lot of room in space, hence its name.  But inside that little capsule would have been pretty small.

This capsule sat atop the most powerful machine ever built, the Saturn V rocket and was propelled into space at 30,000 mph by more than 7.5 million pounds of thrust.  It returned to earth at similar speeds and managed to return the astronauts safely to earth.  Wow.  Stay well:)

Don't Always Believe what you Read on the Internet

To get a better idea about this post, may I suggest you read a post I wrote called "Damn Mesna".  To cut a long story short, during the chemotherapy they wanted to give me a drug called Mesna.  I found an article that said Mesna increases cystine output in the urine, cystine being the key culprit of my kidney disorder.  I had already taken the drug once during the mobilisation process and they wanted me to take it again during the chemo prior to the transplant.

This had worried me a bit so I decided to do a little more investigation.  My first step was to talk to the doctors here in Chicago about it and they came up with the idea of having a catheter and regular bladder washes during the chemo.  I still had that niggling feeling in the back of my mind and as I had already taken the drug once I wanted to check that there were no long term problems so I investigated further.

My next stop was to contact a New York based nephrologist by the name of Dr David Goldfarb.  I'll digress for a minute just to say that Dr Goldfarb is one of the most inspirational doctors I know and one of the leading authorities on cystinuria in the world.  He has never formally treated me so the fact that he will give me an aster to my question is greatly appreciated.  And he doesn't just do it for me he will do it for anyone who suffers from cystinuria.

So I put my concerns to him in writing and it turns out that Mesna has actually been used in a very few cases to treat cystinuria.  Yes there is evidence out there to suggest that mesna can actually decrease cystine levels in the urine.  He even sent me an article to support this.  So their is one thing left for me to do.  Do I believe Dr Goldfarb and the original unsolicited internet article I originally read?

Yeah, it's a no brainer for me.  I'm really glad I dug a little deeper.  It was really nice to get to the bottom of it and put my mind at rest.   I do believe that the internet is a great source of information and as patients it is a great place to start.  But, the information you get from it should be corroborated and scrutinised.  At the very least, you should run anything you find out past your doctor or health care provider before you make any decisions.  It is also a good reminder that you can't always believe what you read on the internet.  Stay well:)

When you're up you're up

Yes, just like the Grand Old Duke of aYork, "When they were up they were up" but on the same token "when they were down they were down".  And at the moment, aside from losing my hair I feel really great.  And honestly, I don't care about that.  More than half the guys I know are experiencing some form of baldness as we all descend into middle age.  So realistically I just feel like one of the lads.  To the women I know that are going through (or have been through) this process I really admire the courage you have all displayed.  I understand how much harder this must be for you all.

OK, so you probably want to know why I titled this post the way I have.  Simply, right now I'm up.  After chemo mobilisation I was down, but certainly not down and out.  But while I'm up I am going to make the most of it.  Right now I feel really great and with both my cystinuria and CIDP under control I feel like I need to get out there and live a little.  After all, even though most people with cystinuria or CIDP (like me) have to organise their schedule around their doctors appointments etc... I still firmly believe that life is for living and while I am "up" I am going to make the most of it.

And I had a splendid day.

I am not telling you all this to gloat or be nasty.  When you have a chronic disease you have to make the most of every good day you have and that is precisely what I intended.  So in the morning I went to theArt Institute of Chicago.  Where as most museums I have been to I have managed to crawl myself through at a snails pace the Art Institute not so.

I think of a scene in the movie "Pretty Woman", when Richard Gere is talking about opera where he basically says you love it or you don't.  If you don't love it, you can grow to have a wonderful appreciation of it but you cannot ever love it.

Now, don't get me wrong I certainly enjoy art, and I truly appreciate the work and the meaning behind each piece.  But if it doesn't tell me a story or I don't get it straight away I am not interested.  To me each piece has to have meaning or tell me something I didn't already know.  I guess that is why I love museums.  To quote Spock from Star Trek, they are "fascinating".  So although I breezed through the place much quicker than I expected I really did appreciate and enjoy it although I did not love it.  My favourite exhibits would have been the indigenous American history artwork and the Picasso's they had on display.

After that I walked through Millennium Park which was right next door.  I saw some street performance and the Silver Bean.  Which is actually called Cloud Gate but all the native Chicago folk call it the Silver Bean.  I do have pictures, but I can't be bothered to download them right now so I will share them with you next time.  In the evening I went to the Ice Hockey to see the Black Hawks play.  Unfortunately, the got hammered by the Nashville Predators 6 -1.  But it was still fun and I had a good time, which brings me to now.

I do understand that my fun in Chicago will soon be coming to an end as I will be going in to North Western Hospital for my stem cell transplant in just over a week.  But I don't live for my disease, I live for me and in the meantime I'm going to make every good day count.  Stay well:)

Back to MSI

I had such a good time the last time I went to the Museum of Science and Industry that I decided to go back.  This time I went with my parents which was both good and bad.  To start with, things like this are better when you go with someone, but on the other hand I am a bit of a geek and I move a fair bit slower through a museum than most people that I know.  And not because of my medical impairment, but because I like to read all the literature provided with all the exhibits, but it means that I take my time.

I did have a mission whilst I was there.  And that was mainly to re-experience the U505 submarine and its exhibit once again.  The first time that I saw it I had a hurry through the sec on part of the exhibit.  This time I had plenty of time and I also bought a ticket to experience the inside of the submarine.  I was inspired by my first visit, this time I wanted to leave no stone unturned.  I was on a mission to see everything.  To read everything.  To learn everything.  I found the whole story of the battle in the Atlantic extremely compelling as well as the specific story behind U505.

The following video I took at the exhibit.  Although the submarine looks pretty big on the outside, believe me, with 59 people on board it would have been extremely cramped.  The junior sailors didn't even get their own bed and a sleep rotation system had to be employed.  Also most of the crew would not have been allowed 'topside' for the voyage which could last up to six months and there were no showers.  Could you imagine the smell?  Here is the video:-

I also have some pictures of the exhibit.  I have no pictures or video of the inside because we were not allowed to take any.  Here are the pictures:-

Not a great picture, but these were the hedgehogs and depth chargers.  Hedgehogs only exploded when they hit something making a spread of them ideal for locating a hidden U boat.  Depth chargers exploded at a certain depth.  As long as they exploded near the U boat they could inflict substantial damage.

The stern of the ship with the rudders, propellers and the aft torpedo tube

Guns for when the submarine had surfaced

Torpedo.  Much bigger than I imagined

Forward torpedo tube

I guess the only thing left to say is if you like museums and you are in Chicago, MSI is a must.  This and the space exhibit are my two favourite exhibits, but I have to say, they are all fantastic.  Until next time, stay well:)