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:)

Baldness and Bruising

I know some people bruise easy.  I have seen pictures some people have been kind enough to put on medical forums where people have had a simple IV insertion and the remnant has been a bruise the size of a tennis ball.  I am not one of them.  Most times I do not bruise from an IV and when I have it has just been a small purpley mark no more than a centimetre.  Others can get bruises of all shapes, sizes and colours.

The intravenous catheter was different.  I don't know why, but it was dark, big and painful.  It was the first time I had had an intravenous catheter, and it did make me consider the merits over the simple two IV placements I had when ever I had been hooked up to the apherises machine.  But that is another post for another time.  I feel my comparison of the two methods could be beneficial to others that might be confronted with the choice in the future.  But that is a post for another time.  A picture of my bruise is here:-

The bruise was biggest on day two post harvest, this picture was taken on day four.  It is now seven days since harvest and the bruise is still there although not nearly as prominent.

The other thing that has started to happen is that I have started to bald.  Now either I have a huge case of rapid onset male pattern baldness or the chemo has started to have its very common yet unwanted side effect.  They said it normally kicked in around ten days after chemotherapy if it was going to.  I thought I'd got away with it because I was up to day seventeen post mobilisation chemo and it only just started.

I woke up this morning and my pillow was covered in hair.  I tried taking a picture of it but it didn't come out very well.  After my shower I noticed my towel attracted a lot of hair too but that picture didn't work either.  So I shook my head over the sink and lots of hair came out and I got a picture of that:-

I think the worst part is it itches over my shoulders and behind my neck, but that is a small price to pay.  Until next time, stay well:)

Take a look

Firstly, thanks to Eddie for posting this link on Facebook.  It gives some really great insights into the HSCT process and although it is MS and not CIDP focussed there is probably more to learn about it as the trials for MS are far more advanced than for CIDP.

Personally, I think what resonates most with me about this post is the decision making process that lead to the author deciding to go ahead with the trial.  This will probably give you all some insights into why I decided to pursue this corse of treatment.  It is also full of useful links and graphs which will explain almost all the intricacies of HSTC. Until next time, stay well:)

Oh yeah, the link:-

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

Headache

And not just the normal run on the mill headache.  I'm talking about the worst blinding, mind numbingly nauseating headache you could possibly imagine and it was caused by the IVIG I had on Monday.  This one was especially hard because I felt like it had passed me by.  On Tuesday I felt fine.  Wednesday morning I felt fine, so I honestly thought that the IVIG headache had decided not to crash the party this month.

Just to clarify.  IVIG headaches are tricky.  Sometimes they just don't turn up.  You dodge the bullet and get to carry on as normal.  Sometimes you feel it coming and can get on top of it early with the right cocktail of medication.  And sometimes it just turns up with a vengeance and there is nothing you can do accept medicate and retreat to a quiet dark room with a cool towel wrapped around your head.

So Wednesday morning, feeling fine I decided to go to the museum of science and industry.  I got there at 9.30 and I had a great time up until about 12.00.  Then I felt it.  It starts off small and slowly starts to crescendo until you are totally and utterly incapacitated.  Without any meds with me I went to the cafe and got myself a drink.  Sometimes hydrating can help, but today it didn't.

There was one thing left to do.  Get back to the hotel, medicate, quiet dark room and a wet towel.  So I got in a cab and headed home.  That cab ride was awful.  By the time I got home I was nauseated and suffering tunnel vision.  I got back to my room just in time to fill the toilet with a delightful shade of green.  Sort of like the river on St Patricks day.

After that it was time to medicate which included Zofran to combat the nausea, then panadol and neurofen to deal with the pain.  Then, quiet dark room and a wet towel.  The other thing that happens is your energy is completely drained.  So I lay down on the bed and when I awoke it was 6.00pm and I felt a bit better.  Today, I am just tired, but I guarantee you this, if I go out I'm taking my meds with me.  Until next time, stay well:)

Last one EVER!!!!!!!

Well hopefully anyway.  Dr Burt says that some patients may need more afterwards but hopefully that won't be me.  Oh, silly me I haven't told you the last one of what yet.  The last IVIG treatment EVER.  Anyone that has IVIG knows how much it sucks.  Basically you go into the hospital, get hooked up to an IV, sit there all day then leave with a head ache and feeling like crap.  Yes, it is like an outing to Movie World.

And I just had my very last one ever.  There were some differences between having the treatment here and in Australia some were better and some weren't.  On the plus side at North Western there was just one bottle of IVIG.  Admittedly, it was a very big bottle that contained 70gms of IVIG, but in Australia I have five bottles each containing 12gms and three bottles of 3gms.  It makes for a much longer day as there has to be seven change overs and a much higher probability of something going wrong.

IVIG

They also ran it through at a much higher rate of 300ml/hr as opposed to 240ml/hr so I was done much quicker than at Cabrini in Melbourne.  Lastly, the good nurses at North Western gave me paracetamol and Benadryl which helped a lot.

So where does Cabrini have the upper hand?  Well, quite simply, the day oncology department at Cabrini is simply more comfortable.  At the North Western blood centre I felt like I was placed in a broom cupboard that had three recliners in it and mine was in the door way.  Cabrini may have more recliners in it but there is also more room and a window that looks out onto a garden.  They also run fluids through with the IVIG which helps, but I did prefer the Benadryl and paracetamol.

Probably the most amazing thing is the service.  Now given my experience over the last month, I have to say that hands down, Americans are the kings of customer service.  But, not in this case.  The service you get at Cabrini is outstanding and the food is better too and the recliners are more comfortable.  Now it is not that the the nurses and staff were bad at North Western.  They were fantastic.  It is simply that there are more nurses on staff at Cabrini and the support staff are also a lot more visible and available (Yes Patrick, that means you).  And at North Western it is hard to get someones attention when you are stuck in a broom closet.

But back to the point at hand.  My last IVIG ever and I will take this opportunity to thank everyone that has given blood ever.  Your gift has given life and helped me every month for the last ten years.  It has kept me walking.  It has kept me functional it has even saved my life.  So thanks to all donors, you guys rock!  Until next time, stay well:)

Living on a Prayer

This guy, Cory Smallegan is having his stem cell transplant the same day I am having mine.  Here's hoping that after his SCT he can sing in front of a audience and not just in front of his computer.  Stay well:)

Damn Mesna

Ha ha ha.  It's all fun and games until someone gets a catheter.  And when I say catheter I don't mean veinous catheter, I mean urinary catheter.  And by someone I mean me.

When I went in for chemo mobilisation they gave me a bunch of drugs.  It did annoy me a little because I like to know exactly what I am going to be taking so I can research it properly.  And I do remember asking before days before the procedure what they would be giving me.  They told me the chemo agent, the lasix and a bunch of maybe medications, but they did not tell me about the mesna.

Mesna is a drug they give you during chemotherapy to protect your bladder from damage.  I think that they forgot to mention it because the drug is normally very well tolerated and has few side effects and is so routine it hardly justifies a mention.  Never the less, they didn't tell me about the drug and after it had been administered I started my research.

I found out what it was for, how it works, side effects etc.  And they I hit a problem.  Under mechanism of action on the wikipedia page it stated that 'drug also increases the output of urinary cystine'.  Now, for most people that wouldn't mean anything.  For my fellow cystinurics that read my blog you know exactly what I was thinking.  My heart skipped a beat.  I felt like I had cut the blue wire when I should have cut the red.  And if I was aware of the administration of this drug I could have raised my concerns with my doctors well ahead of time.

Just to clarify, my kidney disorder, cystinuria, leads to an abnormally high concentration of cystine in the urine which causes kidney stones.  The last thing one with cystinuria would want to do is take a drug that increased urinary cystine.

Fortunately, during the whole mobilisation process they gave me plenty of fluids so the extra cystine should have been washed out and the effects of the mesna are temporary.  Still, it added an element of stress that I didn't need.

However, they wanted to give me more mesna when I go back to have my stem cells transplanted back to me so I raised the issue with my medical team.  The good news is that I don't have to have the mesna.  The bad news is I have to have a urinary catheter and bladder washes whilst I have the chemotherapy.  Oh well, it is a small price to pay I guess.  On the plus side, with all the fluids and lasix they will give me the bladder will be in overdrive.  A catheter will negate the regular five minute trip to the toilet.

On another note I am pleased to say that I have managed to harvest the required 2 million stem cells.  I am not sure what the final count is yet, but they were expecting 20 million and my mid count was 8.7 million.  So all there is now is hopefully my very last IVIG which is tomorrow, and they I get two weeks off until the main event.  Until then, stay well:)

St Patricks Day

Q.  What's a mile long and has an IQ of 50?

A.  The St Patricks Day parade;)

St Patricks day in Chicago is huge.  Yesterday was massively busy, there were people everywhere in a sea of green, metaphorically.  But there was nothing metaphoric about the river of green.

I wish I had more time to roam the city but after harvesting the day before I was pretty tired.  Until next time, stay well:)

Harvest Video

Stay well:)

The Harvest

It made for a busy day.  My alarm clock woke me up at 6.30am.  I was not allowed breakfast so I went straight into the shower before dressing in my hospital garb.  Yes, I do have clothes I wear just for the hospital.  There is no room for fashion when dressing for the hospital.  For me, it involves a t-shirt, loose fitting sweater, tracksuit pants, comfy socks and running shoes.

After dressing it was time to have my last neupogen shot before heading to the hospital with my mother.  My first appointment was with interventional radiology.  Which I guess id a nice way of saying they want to do something nasty to you while taking an x-ray at the same time.  I was here to have my temporary catheter inserted in my chest.  I wanted to video tape it, but the set up was exactly like a real operating room, so I wasn't able to bring my bloggie.

Like the bone marrow transplant, there was no pain during the procedure but it was uncomfortable.  You wouldn't do this for fun either.  Once we got there we were asked to wait in a holding room whilst we filled out all the mandatory paperwork (again).  We were then consulted by the nurse and the doctor came around.  Luckily for me I was the first cab off the rank that day so there was virtually no waiting.  Before I knew it I was being trollied around level four of the Galter building to the operating suite.

Once there the room was very busy with the prominent exception of one kind of important individual, the doctor was not there.  However, he was not far away so the nurses started busying themselves preparing me for the procedure.  Again I found myself talking about the usual rubbish in order to keep my mind off the procedure.  After they had laden me in antibacterial and sterilising solution it was time to get the show on the road.

Normally the doctors prefer to put the catheter in the right shoulder, but since the wires for my neural stimulator run down the right side of my neck into my chest, they decided to go in the other side.  I wasn't too unhappy about that.  They then moved the x-ray machine over my chest which looked like some UFO from a sic-fi movie.  The doctor had me turn my head away while he worked so I could not see a thing.  It felt like a lot of pulling and pushing, but after about ten minutes he was done and I had three delightful tubes protruding from my neck.

They had me sit in the recovery area for about ten minutes before letting me go and then it was down two floors to the blood centre.  Before they got started they had to draw some blood to test.  While I waited for the results they told me to go and get some breakfast which I was quite happy about as hunger had certainly started to take hold.  I have to say though that the cafe at North Western Hospital does not do a very good breakfast.  After which I felt myself feeling a little worse.  The local anaesthetic in my shoulder was starting to wear off and pain was beginning to proliferate.  So we headed back to the blood centre where we were immediately shown through to our apheresis room.

The nurse checked the catheter site and adjusted the taping.  She then gave me some Tylenol and we were good to go.  She connected up the apheresis machine, which looked more like a computer from a bad 1960's space movie and away we went.  Video and pictures will follow later.  I then sat back and relaxed as the four hours of blood processing began.  The main symptom I had during the process was tingling in my face and teeth.  This is because the calcium in your body is slowly leached, so to counter this they gave me a supplement via the IV.

Tick, tock, tick, tock........  The time seemes to pass by very slowly.  Luckily I had Ferris Beuler to keep me company as I snailed my way through this endeavour.  And what a great movie.  Any self respecting 80's kid has to have it in their top ten.

When it was all done the catheter line could come out, and an apple juice and half an hour later I was ready to go.  Upon completion I would have to say that I did not feel that bad, but certainly not 100%.  I was mildly feverish, had a headache and felt extremely warn out, so it was back to the hotel for a sleep and some food and I felt much better.  Until next time, stay well:)

Harvest Eve

Tomorrow will be a big day.  It is stem cell harvest time.  I am looking forward to it too.  I have taken my antibiotics and anti-fungals and thanks to mum I have had my neupogen shots everyday.  I only have two more injections left and then I'm done.

Given what I've read from other peoples experiences, some have found it really hard, with nausea, bone pain and general discomfort being par for the course.  If anything the only symptoms I have suffered are a small amount of nausea and a touch of lethargy.  As for bone pain, I may have had a few aches and pains but I have to say that it was probably all in my mind as I really feel that if no one had told me about the side effect I wouldn't have felt anything.

So bring on tomorrow.  I need to be at interventional radiology tomorrow bright and early at 7.30am.  There they will insert a temporary catheter line into my subclavical artery.  Once that is done I make my way to the blood centre to be hooked up to the apheresis machine.  Here, I will have my stem cells harvested.

They are going for at least 2 million stem cells which shouldn't be a problem as most people get way over that amount harvested and my blood tests have looked pretty good.  Well, I've got an early start in the morning so I should get some sleep.  So goodnight and stay well:)

Bone biopsy video

I deliberated for a while on whether to post this or not.  First, the view isn't that good and second I hated the audio.  But what the heck.  I've done a voice over and hey presto.  Stay well:)

I was wrong

dI don't know what it is about boredom, but it blinds you to the obvious.  Just after I finished writing my post yesterday I suddenly realised that I had a bucket load to write about, I just hadn't figured it out yet.  It's funny how at times you can easily miss what is staring you right between the eyes.  And since I have not really done that much that is blog worthy I will divert my attention to another blog that I follow.  I have referred to this blog before and it belongs to Westby G Fisher MD.  I like the way he writes and he makes some interesting points.

This one point he makes is very interesting.  People shy away from the topic for the fear of being a sexist. But I don't think Dr Wes is a sexist.  Far from it.  But in this post he is just scratching the surface on what is a topic I believe needs far more attention.  His post is here:-

http://drwes.blogspot.com/2012/03/sexism-in-government-heart-health.html

Now the point I want to make here is that women are so much better than men at drawing attention to their health issues than men and good on women for doing it too.  I will use the breast cancer, prostate cancer example.  Both cancers effect a similar number of people, and both have similar death rates.

In Australia, there are two sporting events in Australia, pink footy day and Jane McGrath day at the AFL and cricket respectively.  Both days are designed to raise money and awareness for breast cancer, and they do a fantastic job doing it.  Commentators, players, officials and spectators alike all get behind it and the organisers can all give themselves a pat on the back because they do a fantastic job.

My point is why is prostate cancer or other mens health issues not given the same amount of media exposure?  I mean football and cricket are both sports that have a definite male skew, so why are these sports not utilised to communicate what is a male problem?

I'll tell you why.  Because men are lousy at speaking out about their health issues.  I don't know what it is.  Whether we are embarrassed or ashamed or lazy or prefer to just deal with these things by themselves or all of the above, but our health issues just don't get the same coverage.  So I've put a few ideas on what men can do to help themselves.

1. If you think something is wrong, get it checked.  You help yourself and the people just like you by getting in the system and beefing up the statistics.
2. Get a check up.  Officially I have one every 12 months.  Did you know that women account for 60% of all doctors appointments.  By looking after yourself you can help redress this imbalance and bring attention to men and their problems.
3. You don't need to have a great idea, just follow the ideas of others.  THere is strength in numbers.
4. Support by showing awareness or giving money.

These are but a few ideas.   As for women, we could really use your help or just keep doing what you're doing.  It is up to us men to catch up.  Until next time, stay well:)

I'm tearing my hair out

I have been advised to stay away from sick people and crowded public spaces for the start of this week as my immune system will be at its lowest after mobilisation.  And yeah, I'm tearing my hair out.  I've thought about what I could do, and I thought I could spend time on my blog but it's funny how time does not increase inspiration because as much as I have wanted to write I've got nothing.  Seriously, the best I can come up with is to write about being bored.

It is funny, I really think that I wouldn't be bored if the good people at the hospital hadn't said anything and I just decided to mope around the hotel room of my own volition.  It's like when they tell you you are not aloud to eat anything after midnight it's a sure fire way to make sure you will feel hungry at breakfast time when every other day I can go without breakfast quite happily.

So, Monday morning my mother escorted me to the hospital to have blood work done.  I'm not sure if I had been lucky up until now or if I just caught them on a busy day but this was the first time I had any real wait.  It took over 40 minutes to get into the lab to finally have my labs drawn, but I didn't mind.  In Australia I have had to wait over two hours before and it's not like I had somewhere else to be.  After the labs I started to feel a little tired again so we went and got a coffee before we took a cab home.  I assume all the tests came back good because I haven't heard back from them.

Other than that I have started getting a tidy little morning routine together.  I wake up at 7.00am and meet my mother in the kitchenette where I get my daily dose of neupogen.  I also have my antibiotic which has to be taken on an empty stomach before returning to bed for an extra little nap before I wake for breakfast and the remainder of my pharmaceutical cocktail.

On my naughty notes, I haven't strictly followed doctors orders precisely.  Before I bored myself to death I had to get out.  So I decided a nice little trip to the movies where I could sit in the corner away from other potentially diseased individuals and be entertained.  We went and saw 'Act of Valour'.  If you like action movies I'd wait for the DVD, if you don't like action movies I wouldn't bother.  And today I went out for lunch to somewhere quiet.  We also stopped off to look for a present for my daughter at American Girl.  Wow, that store is something else.  My daughter would be in heaven but me I felt like a fish not just out of water but in the middle of the Sahara.

On the plus side apart from some mild, intermittent fatigue I have felt really good.  The most common side effect of neupogen is bone pain and I have had none of that.  Well that is it for me for today, I will post again tomorrow.  Until then, stay well:)

Three Cheers to...... ME!!!!!

Every time I hit a mile stone with my blog I wonder about whether or not I should let you all know about it.  I don't want to show off or anything.  But I always end up thinking "No!"  I enjoy my blog on many different levels and I am really proud off the fact it is getting read by many people all over the world.  So, what is this new milestone I have just passed?

15,000 pageviews!  And to add to that people have left over 200 comments and I have 41 subscribers.  However, my technorati rating hasn't changed much in the last couple of months, so if you have any ideas about what to do about that, please let me know. Well, thanks to all of you for reading.  Stay well:)

Neupogen Video

Stay well:)

Neupogen

Today was the first day I had to have my neupogen injections.  Neupogen, or filgrastim as it is know generically, is used to stimulate the production of stem cells in the bone marrow so when it comes time to harvest I will have plenty to collect.  The most common side effect is bone pain but luckily I have not got any of that.

In all honesty, the injections are quite straight forward.  The most confusing thing about it is the instructions.  There were pages explaining the process from preparing the vile and the syringe,  but most of it was redundant as the neupogen comes in pre filled syringes.  So the process, which was really quite simple involve taking the syringe out of the sterile packet, removing the rubber stopper, wiping down the injection site with an alcohol wipe, insert and depress in the fatty tissue of the belly (which my wife reminds me I have plenty of).

At the hospital Amy said that it was simple and she was right.  The instructions were really more confusing than helpful.  However, there was one more obstacle I didn't foresee.  The hospital had provided an at home sharps disposal canister.  We couldn't figure out how to put the syringe in the container as the hole was not big enough.  We figured it out in the end.

Thanks to my mother who helped me with the injections.  Until next time, stay well:)

A day with my Wife

I meant to post about this earlier.  Before I had mobilisation I spent a day in Chicago with my wife.  We had a wonderful day and here are some of the pictures we have of that day.  Stay well:)

Suzie at Navy Pier

The Original Ferris Wheel

Suzie a top the John Hancock Building

Can you believe she locked me out on the window cleaning ledge

What Difference a Day Can Make

I don't want to try and make a big deal about how bad I felt yesterday and the day before because I really didn't feel that bad.  Just tired and a little yucky.  My energy levels were way down but I felt very comfortable and perfectly fine sprawled out on the couch sleeping and watching TV.  My choice to be a little proactive was probably the wrong one but hey, I still managed to get plenty of rest and on the plus side, today I felt great.

I decided to have a small breakfast as I seem to feel a little better just after I eat, but I didn't want too much to eat as we were going out for brunch later.  And that is what I did.  I surprised myself too.  We went to a great little place about four blocks from the hotel and I managed to walk the whole way without even feeling a little tired.  I managed to eat all my brunch and I have gone the whole day without felling any nausea or fatigue.

It is quite a relief.  Although I want to stress that it really wasn't that bad, I also was not relishing the possibility that yesterday was the best I was going to feel between now and my transplant day.  Luckily for me it wasn't.  So today I got back on board the tourist band wagon.

With my parents for company, my friend from DC and her sister, cousins and sister's boyfriend we headed down south to visit the Robie House, located on the grounds of the University of Chicago.  It was a stunning piece of architecture, designed by Frank Lloyd Wright who really set a new bench mark for the style of American architecture.

After that we did a mini driving tour of Chicago and saw some of the other marvellous Chicago land marks including Barack Obama's house.  Tonight we are off to dinner again, which I am looking forward to.  Until next time, stay well:)

Still Tired

Given that I certainly didn't feel 100% yesterday I was quite surprised at how much I managed to do.  Unfortunately yesterday was the last day that my wife was here for about three weeks.  As I have said so before, one of the things that worries me the most is that we are leaving the kids alone for the first time in forever, so my wife went home to look after them.  Not to say the kids haven't enjoyed themselves.  I'm sure that Grandma has spoilt them rotten.

But as my wife left to return to Australia, I have had three very welcome visitors.  First an old friend from university who now lives in Washington DC managed to wrestle time away from her family to come and visit me in Chicago.  It is quite convenient for her too as her sister lives here.  Second, my parents have come to stay.  They will be here whilst I have to take the neupogen shots and will stay right up until harvesting.

However, it has meant I had a busy day yesterday.  After my wife and I had breakfast, I had a nap.  After the nap, Abigale, the sister of my friend from DC drove us all to the airport so I could drop my wife off and also pick up my friend from DC.  There was a little bit of a change over so we all had lunch together before we headed back to town, and you guessed it, I had another nap.  Once my parents turned up we all went out to dinner and I was staggered that I actually managed to make it all the way to 10.30 before I finally hit the wall.  I was in bed by 11.00pm and I managed a healthy 10 hours sleep which brings me to now.

This morning I actually feel great.  Mind you, I haven't got out of bed yet.  The only symptom I have really had post mobilisation has been tiredness though, but right now I do feel like I should get up and do something.  Oh yeah, one other symptom I had was just some very mild nausea, so I took some Zofran and felt much better afterwards.

Well, I did say my energy levels felt much better today and hopefully they will stay that way.  Thanks to everyone who has sent me messages of encouragement, it is great to know I have so many people in my corner.  Until next time, stay well:)

I'm tired

Yes, I bet from the fact that I haven't posted in a couple of days you have thought I might be a little under the weather.  The truth is it really hasn't been that bad.  I have just been really tired to the extent I am virtually sleeping between 14 and 16 hours a day.

I haven't experienced any nausea or vomiting, and by now all the chemo should be out of my system.  However, my white blood cell count will not reach a low until early next week, so I think I will just stay tired until then.

I guess one thing that does worry me a bit about the whole procedure is that even though I felt the mobilisation wasn't that bad I did think to myself that I wouldn't want to back up and do it all again the very next day, which is what I will have to do for five days when I do the chemo for the actual stem cell transplant.

But for now it is just lots of sleep for me.  I have to take my temperature twice a day to make sure I do not have a fever and on Sunday I have to start the neupogen shots in order to stimulate my stem cell production.  At that time I also have to start a bunch of prophylactic medications just to make sure I don't get any nasty bugs.  Oh yeah, there is also more blood work to do Monday morning.

Well, that's about it from me for now.  I think I might go back to bed now.  Stay well:)

Klimmy Clone

Apparently your hair falls out around the four to five day mark after chemo, so in order to prepare for this auspicious occasion I decided to get a head start.

Before the cut

During the cut

(I think my wife, aka. the demon barber of Fleet St, enjoyed this a lot more than I did;)

Afterwards

Brain surgery scars and horns

The last time I had my hair cut this short was when I had my brain surgery.  You can check out the pictures of that here.  Stay Well:)

Chemo Time

The Board

The infusion.

I can't sleep.....

With all the drugs they have given me over the last 24 hours I can't sleep.  I'll start with where I left off last post.  I am now pretty much all the way through now so I should be able to give you a fairly accurate account of what happened.

The first thing that they started was the fluids.  150mm per hour of saline for 24 hours.  That is 3.6 litres of fluid over the entire day plus all the water and other fluids I ingest.  After that the fun stuff starts.  The first drug they give you (and for me that started at 3.00pm) was a drug called Mesna.  Mesna is a drug they use to alleviate the symptoms of the chemotherapy drugs.  How it works I am not quite sure.  When I came in yesterday I didn't know it was on the cocktail menu so I haven't had time to research it yet.

After that they ran through a dose of zofran for a prophylactic anti nausea, they also ran through a shot of  dexamethazone for the same reason.  This was weird they said that it could make your arse feel like it was on fire.  I wouldn't say it felt like my arse was on fire, but I did feel rather intense pins and needles all over my anus.  Delightful hey.  Luckily, It only lasted a couple of minutes and then it was over.

Next, the main event.  The chemotherapy.  They give just a single dose of a drug called Cytoxan in order to kill off a few blood cells.  The resulting outcome is the body goes into stem cell overdrive in order to replace what has been lost, so in ten days when harvesting starts their are plenty of little stemmies to collect.  The cytoxan was run for about two hours.  But there was a problem.

I starter getting a side effect to the cytoxan called wasabi nose, because you get a burning sensation in your nose.  Seriously I felt like I had been sniffing chilli powder and I was twitching my nose like a rabbit on steroids.  In order to get past this the infusion rate of the cytoxan was reduced and gave me some benadryl which made me feel drowsy.

In order to make sure that I wasn't retaining all the water that they had given me they also gave me a drug called lasix which is designed to make you go to the toilet.  So if it wasn't enough to chuck 3.6 litres of fluid through my system I needed something to make me go even more.  Over the night I had three courses and on the first one I passed over a litre of urine in 45 minutes.  That level of urine output made my kidneys hurt more, so to combat this they gave me some Norco and Fiorcet, which were both analgesia to arrest the pain, and this seemed to work fine.

The other problem I had was that after I ate my evening meal of lasagne and mac and cheese I started to feel a little nauseas.  I decided to tell the nurse as I thought it best to nip this one in the bud, which I think was the right thing to do as they gave me more zofran and I felt fine.  Courtesy of the benadryl I then slept for four hours where I woke up at two and couldn't go back to sleep.  So I polished of the remaining of season two of Supernatural.  After breakfast I fell asleep again and woke up around 12.30, just in time for lunch.

So how do I feel.  Honestly, for those that are following me through the SCT process, there is nothing to fear from mobilisation (so far).  Apparently my WBC will hit rock bottom in about five days so I might not be over the fun part yet.  Also, hair falls out about the five day mark so I will keep you informed of any follicle displacement.  So right now, all is good.  I have lots of reading to do and I still need instruction on what to do with the prophylactic medications they want me to take at home and the neupogen shots.

I will keep you posted.  Until next time, stay well:)

A quick tour of my hospital room

It's procedure time

This is where I had my IV put in for mobilisation. It is only an IV line, just about everyone has had it done before.  But this for me was different.  I have never had chemo before, so this did get the nervousness going a bit.  Not that my BP would give anything away, it was a picture perfect 117 over 73.  This video does however highlight the fact I need to lose weight.  Well in August anyway.  Stay well:)

Waiting....

Well the day has finally arrived.  This morning I woke up  at the Senaca Hotel bright and early so I had time to get ready for my 7.30am appointment at the second floor of the Feinberg Pavilion.  Because I had my overnight bag and I was worried about being late we decided to catch a cab.

At around 7.45am we were greeted by the admissions representative who told us to sit tight whilst they tried to prepare a room for us, so we waited.  The waiting doesn't really bother me.  I know I'll be in here overnight so whether I wait now or later is really of no consequence.

At around 8.30 the rep came back and we were off to find my hospital room.  It was quite a hike.  We took the elevator down to the basement and from there we walked through the bowels of the hospital to the Prentice Women's Building where I am to undergo mobilisation chemotherapy.  At this point the admitting rep said his goodbyes and I was introduced to Marie, my Patient Care Technician (PCT) and Jon the RN.  After the standard formality with the paperwork and signing the necessary disclaimers, Jon hooked me up to the IV and started running fluids through.

At 11.00 Amy came in to ask me all the standard questions.  Do I have diabetes?  Do I smoke?  Have I ever had a toy car get stuck in my ear?  Have I ever got my hand caught in a vending machine?  (FYI, the answer is no to all)  She also ran me through the whole procedure and answered all my questions so I would know what to expect.

Now I am just waiting for the nurse to come in and get the ball rolling.  All the meds have been ordered, Dr Burt has signed off on everything, so all that's left to do is get this party started.  Well, infusion anyway.  Stay well:)

Thinking smarter

Innovation in the medical field does not always come from the creation of a new drug, the invention of new equipment or the discovery of a new procedure.  Sometime it just comes from thinking smarter and using all the tools available to us for their maximum potential.

Personally I find this story site inspiring as it does not necessarily take a doctor or scientist to come up with an idea like this (although it probably did) and shows that anyone with a good idea could probably help.  This is the longest kidney transplant chain ever.

Kidney transplants are nothing new.  They have been around for a while.  Unfortunately there are more people that need kidneys than there are kidneys available.  Either one has to wait for the tragic demise of someone who has agreed to donate their organs or rely on a friend, family member or loved one to donate one to you.  Enter the kidney transplant chain.

You are willing to donate a kidney to a loved one, but you are incompatible.  However, there is a match out there so you donate your kidney to them.  Their loved one then donates their kidney to someone else in a kind of pay it forward scenario and eventually someone donates a kidney to your loved one.

This is just what happened in this case.  The story was published by the NY Times where 30 people donated kidneys to strangers so their loved one could receive a kidney.  Here is the story:-

http://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html?_r=1&pagewanted=all%3Fsrc%3Dtp&smid=fb-share

As a result, 30 people have had their lives improved and/or saved by being able to receive a kidney and there are 30 less people on the transplant list, which means that those remaining are a little more likely to receive a life changing kidney if one becomes available.  Thanks to Dr Goldfarb who drew my attention to this article.  Stay well:)

Museum Pictures

In my post about the science and industry museum I talked about how visually stunning all the museum's were.  So, I thought I'd show you some pictures.  I cannot take credit for taking these myself, I ripped them off google images.  Stay well:)

Science and Industry Museum

Field Museum

Adler Planetarium

I am not alone

Not alone.  It sounds like something from an x-files episode, but it isn't.  It is much simpler than that.  After two weeks of being in Chicago by myself I have finally been joined by my wife.  And not a moment too soon either.  On Tuesday I start the treatment proper.  No more doctors appointments, no more tests or uncomfortable procedures.  Tuesday is the beginning of mobilisation.  An overnight stay in hospital where I will receive one dose of chemotherapy in order to stimulate my stem cell production so when it comes time for harvesting I will have plenty of stem cells to collect.

But on the plus side I am not alone anymore.  Having my wife here is awesome.  It is great to have someone here to share things with, someone to talk to and someone for support.  I will probably need the help after mobilisation so it will be great having her here.  Between now and then I have two days with my wife in which we can share the delights of Chicago together.

So what to do?  My wife loves shopping and she doesn't really share my fascination with space and space flight.  If we were here together the whole time she would have let me indulge my passion but since we only have two days I will probably have to switch the Adler Planetarium for Macys.  I am also thinking that the Art gallery might also be a good location.  I hear they have a stunning collection of Van Goughs.

Well, I will tell you what we have done once we have done it.  Until then, stay well:)

Science and Industry Museum

One thing I love about the museums here in Chicago is the way they look from the outside.  The Adler Planetarium was an awesome dome shaped building out on a spit into lake Michigan.  The Field Museum and the Science and Industry Museum are both large magnificent looking building that truly look majestic in nature, made of a beautiful sandstone with large pillars out the front.  It is exactly what one would expect a museum to look like.  All three of them fit right in with the wonderful architecture that this city has to offer.

But today I am talking about the museum of science and industry.  It did not disappoint.  As far as my museum experiences go here in Chicago I am now shooting three for three.  Again, the biggest problem that I had was time.  There was way too much to see in one day so I think that I will have to go back to finish off seeing all the exhibits.

When I went to the Field Museum I made the mistake of paying for the extra exhibits, this time I did not and I wished I had.  One of the most fantastic exhibits I have ever seen in any museum anywhere was the exhibit of submarine U505.  The exhibit told a story that was both engaging and educational.  It was brilliantly displayed with all kind of different ways of displaying the material.  It really was a treat.  Unfortunately if you wanted to go inside the submarine that cost extra, but by the time I was there I really wanted to go inside.

The other funny thing was that it said I should give half an hour for the exhibit.  I had an hour and twenty minutes until I was due at the auditorium to watch storm chasers and I ran out of time.  It was that good.  If I manage to get back I will take another look and take the tour inside the submarine.

As I just said, after the submarine I went to see storm chasers at the auditorium.  The auditorium was one of these massive dome shaped screens.  It wasn't 3D, but you felt surrounded by the screen which was extremely effective.  The movie was quite spectacular too.  Some of the footage they got was quite spectacular.

After the movie was over I some how ended up in the space exhibit if you can believe that.  They had great displays from the early pioneers of the space program right through to the future of space travel.  I got lost in that one for over an hour too.  After that I had time for a couple of the more minor exhibits and then it was time to go.  I will have more for you from Andy and his wonderful Chicago adventure tomorrow.  Until then, stay well:)

Proactive

Dr Burt is a hard man to tie down just to chew the fat about stuff.  He is always on the go and busy as a man can be.  So when I had my bone marrow biopsy done I decided that it was a good time to tie him down and ask a him a couple of questions.  After all it is not like he could just up and leave half way through performing a medical procedure.

Now I have a list of questions as long as your arm for Dr Burt, but I thought I would just start with one of them as time was of the essence and it is easy to be distracted when you have someone drilling a hole in your butt.

So what was my first question?  Before I tell you I think it best to set a bit of a background as to how I got to want to ask this.  If you hadn't noticed I have blogged a lot recently about Rare Diseases and the Global Genes Project.  There are so many rare diseases out there that are severely debilitating and life changing.  Now I have two of them, but I feel that there are others out there that also suffer and there is very little out there to help them.  Now I want to help and I feel I might have found a way to help a few.  Now there are over 7000 rare diseases and I don't ever expect to be able to help all of them, but I do think there I might be able to help some and you've got to start somewhere right?

Enter Dr Burt.  His programs helps people with all kinds of autoimmune diseases and I am lucky enough to make it onto his CIDP program.  Now one of the issues that faces Dr Burt is that although the treatment is the similar for all autoimmune disorders, each disease needs its own protocol and each disease needs its own FDA approval to make it to trial.  That is a lot of work, needless bureaucracy and paperwork.

Now I felt that some people were missing out on getting in on a trial because they had a really rare disease that was autoimmune in nature but so rare it did not make it onto the protocol.  So I talked to Dr Burt about protocols for the really rare autoimmune diseases and in our short discussion we came up with idea of having one protocol for all the extremely super rare autoimmune diseases.  Independently, these diseases are too obscure for any real research into treatment options, but together, they could gain admittance onto Dr Burt's trial and potentially give them a treatment that could make a real difference in their lives.

I am a big fan of what Dr Burt has done/is doing.  Results so far have been impressive, and the more diseases that can be covered by his study and the more people that enter the study under all protocols, the faster they can get this treatment to be a part of mainstream medicine the better for all sufferers.  So in order to help Dr Burt I said I would compile a list of rare autoimmune diseases for him so he could get a start on it.

Now of course not every autoimmune disease can qualify.  If there is too much evidence that the disease is not autoimmune or the disease is not aggressive enough, it might not qualify.  But that is not for me or you to decide,  Dr Burt and his team, the ethics committee at North Western University and the FDA will make that decision.  But in order to put this list together I need your help.  The nature of a rare disease means that I probably haven't heard of it, so if you or someone you know suffers from an autoimmune disease please let me know what it is by leaving a comment on this post.

Please do not leave a message for me if your disease is on one of the lists below (If it is your disease is already on my radar) or your disease is not autoimmune or suspected to be autoimmune.  The lists are as follows:-

Diseases already covered by Dr Burt's trial-

1. Antiphospholipid Syndrome
2. Autoimmune Bullous Skin Disorders
3. Autoimmune-Relared Retinopaty
4. CIDP
5. Crohn's Disease
6. Devic's Disease
7. Idiopathic Inflammatory Myopathy Diseases
8. Leukocyte Adhesion Deficiency Type 1
9. Morphea
10. Multiple Sclerosis
11. Myasthenia Gravis
12. Optic Neuropathy
13. Primary Biliary Cirrhosis
14. Pulmonary Fibrosis
15. Rheumatoid Arthritis
16. Sarcoidosis
17. Scleroderma
18. Systemic Lupus Erythematosus
19. Systemic Necrotizing Vasculitis
20. Type 1 Diabetes
21. Critical Limb Ischemia

Other Autoimmune Diseases (courtesy of CIDPUSA)

1. Acute disseminated encephalomyelitis (ADEM) 
2. Alzheimers 
3. Alopecia areata
4. Ankylosing spondylitis
5. Aneurysms 
6. Arthritis
7. Antiphospholipid Syndrome  
8. Addison’s Disease
9. Autoimmune polyendocrinopathy
10. Hemolytic Anemia 
11. Inner Ear Disease 
12. Lymphoproliferative  Syndrome (ALPS)
13. Thrombocytopenic Purpura (ATP)
14. Autism or Autistic disorder 
15. Hemolytic anemia
16. Hepatitis
17. Oophoritis
18. Behçet's disease
19. Bullous Pemphigoid
20. Cardiomyopathy
21. Crohn's disease
22. Chronic Fatigue Syndrome
23. Dermatomyositis
24. Diabetes mellitus, type 1
25. Epilepsy Autoimmune
26. Kawasaki's Disease
27. Glomerulonephritis
28. Graves' disease
29. Goodpasture's syndrome
30. Guillain-Barré syndrome
31. Inflammatory bowel disease
32. Lupus nephritis
33. Multiple sclerosis
34. Myasthenia gravis
35. Myocarditis
36. Parkinson diseases
37. PANDAS
38. Pemphigus/pemphigoid
39. Pernicious anemia
40. Polyarteritis nodosa
41. Polymyositis
42. Primary biliary cirrhosis
43. Psoriasis
44. Relapsing Polychondritis
45. Rheumatic fever
46. Rheumatoid arthritis
47. Sarcoidosis
48. Scleroderma
49. Sjögren's syndrome
50. Systemic lupus erythematosus
51. Thyroiditis
52. Ulcerative colitis
53. Uveitis
54. Vitiligo
55. Wegener's granulomatosis
56. Wilsons Disease

The following links may be useful to you:-

www.cidpusa.org

www.stemcell-immunotherapy.org

http://www.clinicaltrials.gov