shakesandstones

Thinking smarter

2012-03-05T23:41:00.000+11:00

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

2012-03-05T16:01:00.000+11:00

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

2012-03-05T10:08:00.000+11:00

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

2012-03-04T14:18:00.000+11:00

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

2012-03-04T10:28:00.000+11:00

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-

Antiphospholipid Syndrome
Autoimmune Bullous Skin Disorders
Autoimmune-Relared Retinopaty
CIDP
Crohn's Disease
Devic's Disease
Idiopathic Inflammatory Myopathy Diseases
Leukocyte Adhesion Deficiency Type 1
Morphea
Multiple Sclerosis
Myasthenia Gravis
Optic Neuropathy
Primary Biliary Cirrhosis
Pulmonary Fibrosis
Rheumatoid Arthritis
Sarcoidosis
Scleroderma
Systemic Lupus Erythematosus
Systemic Necrotizing Vasculitis
Type 1 Diabetes
Critical Limb Ischemia

Other Autoimmune Diseases (courtesy of CIDPUSA)

Acute disseminated encephalomyelitis (ADEM)
Alzheimers
Alopecia areata
Ankylosing spondylitis
Aneurysms
Arthritis
Antiphospholipid Syndrome
Addison’s Disease
Autoimmune polyendocrinopathy
Hemolytic Anemia
Inner Ear Disease
Lymphoproliferative Syndrome (ALPS)
Thrombocytopenic Purpura (ATP)
Autism or Autistic disorder
Hemolytic anemia
Hepatitis
Oophoritis
Behçet's disease
Bullous Pemphigoid
Cardiomyopathy
Crohn's disease
Chronic Fatigue Syndrome
Dermatomyositis
Diabetes mellitus, type 1
Epilepsy Autoimmune
Kawasaki's Disease
Glomerulonephritis
Graves' disease
Goodpasture's syndrome
Guillain-Barré syndrome
Inflammatory bowel disease
Lupus nephritis
Multiple sclerosis
Myasthenia gravis
Myocarditis
Parkinson diseases
PANDAS
Pemphigus/pemphigoid
Pernicious anemia
Polyarteritis nodosa
Polymyositis
Primary biliary cirrhosis
Psoriasis
Relapsing Polychondritis
Rheumatic fever
Rheumatoid arthritis
Sarcoidosis
Scleroderma
Sjögren's syndrome
Systemic lupus erythematosus
Thyroiditis
Ulcerative colitis
Uveitis
Vitiligo
Wegener's granulomatosis
Wilsons Disease

The following links may be useful to you:-

www.cidpusa.org

www.stemcell-immunotherapy.org

http://www.clinicaltrials.gov

The Field Museum

2012-03-03T14:52:00.000+11:00

Before I tell you about the Field Museum which I visited yesterday I just want to tell you something of a more personal nature. Tomorrow I will be joined by my wife for a week. And I am really looking forward to it. Sure these days you are never quite as alone given the communication tools available (Skype, FaceTime, etc) but you still can't beat that personal contact. I have missed my wife and I have missed my family and having my wife here will be very comforting. However, there is a downside. Never have both my wife and I been away from our kids for this length of time and when we have we have never been more than a couple of hours drive away. I understand that I have to do this, but I do feel guilty dragging my wife half way across the planet and away from the people that need her most just to be with me.

Well now onto the Field Museum. As far as Chicago museums go I'm batting 2 for 2 now. All the exhibits were great. The only problem was there was not enough hours in the day and I only got to see about a third of the place. But, if the remaining two thirds are as good as the first I am in for a real treat if I go back.

I did make one mistake however. I decided to pay a little extra to see the Mummy and Genghis Kahn exhibits and although they were both fantastic, educational and informative I could have spent more time in other exhibits that were just as good and required no extra funding. I have to say I loved the exhibit on the Native American Indians. If you're going to learn about that it is always best to go straight to the source. And there would be nowhere closer to the source than the heartland of the American mid-west.

In all, it was a fantastic museum and I thoroughly enjoyed my visit. Tomorrow I will tell you about the visit I had to the science and industry museum. Until then, stay well:)

On top of the world

2012-03-03T02:46:00.001+11:00

At the top of the Sears Tower. Stay well:)

It keeps rolling on...

2012-03-02T15:12:00.000+11:00

After I had my biopsy I actually felt quite tense, a little anxious and a little flustered. I thought that going back to the hotel would not be the smartest idea as sitting down and doing nothing would merely intensify my negative emotions as I would have plenty of time to ponder the procedure. Instead I decided to distract myself by ascending the Sears Tower (ST). Sorry, the Willis Tower. Oh who cares, whatever it's called if you take my advice you'll go no where near it.

Yes, I was severely disappointed. If you visit Chitown and have a hankering to scale a tall building may I suggest the John Hancock building (JH). I will elaborate:-

The only win for ST is it's higher.
Elevators. JH has the fastest lifts in the northern hemisphere. The express elevators in the ST were broken. The trip to the top was three lifts. If felt like someone promising you a ride in an Astin Martin DB9 and then turning up in a Toyota Kluger.
The view is better from the JH. It is on the peripheral of the city so you can see the whole city, it is also closer to the water so you get better lake views too.
JH has a coffee shop and bar at the top. ST does not.
JH had better off window displays.
JH had an informative and interesting audio tour even if it was by David Schwimmer. ST did not.
ST did have the glass floor experience, but the JH had an outside area so you could really experience the height of the tower.

Now my experience may have been skewed because I had only two hours before had a stick in my arse. But even in hindsight, the JH was way better. After I finally descended the structure I sat down for a well earned coffee before I caught up with friends where we had dinner at the Bedford Bar, which was very nice. Then we went and watched some country and western music. Normally I am not a fan of C and W, but here they just do it so much better. The musicians were extremely talented.

On another note, I got the results of my bone marrow test and they were all good, so I don't have cancer and I am all go for next tuesday. Next time I will post my pictures atop the ST, until then, stay well:)

Biopsy

2012-03-02T04:11:00.000+11:00

I tried to take video of my biopsy, but it didn't come out right so you're just going to have to take my written summation of events. As with most medical procedures I have I like to do my research before I go in. This time, I wished I hadn't. I decided to watch the procedure on youtube the night before which was a mistake as it meant I got a first hand glimpse of the terrifyingly large needle they used to take the biopsy and also the patient that they videoed did an awful lot of whining. Needless to say my mindset was skewed negative before I had even started.

My biopsy had been booked in for 12.30 but they wanted me to get there half an hour early for preparation. Paula arrived first, then Dr Burt followed by the pathology nurse. They had me take off my shoes and jeans then lie down on the treatment table. The first thing that they did was put in some local anaesthetic which was good as the thought of having someone drill out a portion of my bone without would be quite painful.

After the anaesthetic had been administered Dr Burt checked the area to make sure the area was suitably numbed and then he did it. He shoved a big stick in my arse. It wasn't so much painful as uncomfortable and as happens many times when I have procedures like this, I started to sweat. And not just normal sweats, big time sweats that I could feel running down my forehead.

The first thing they did was drain some of the fluid out of my bone marrow followed by the main event where he took a chunk of my bone out. It didn't hurt much at all. The most unsettling thing was the scratching sensation. I didn't like that at all. It was almost like the grinding of teeth.

And that was pretty much it. All the needles were removed, gauze was placed on the needle sight and then I was made to sit on my butt for ten minutes as a way to apply pressure. They fetched me a glass of water, and finally I was allowed to go. Now the procedure was not as bad as I had first imagined, but you certainly wouldn't do it for fun. A day later I would be lying if I said my bum was not sore, but all I have to show for it is a little red dot. I have to go back to the hospital today for more blood work and it will be a cab ride. I certainly do not feel up to walking that far. Until next time, stay well:)

2012-02-29T20:59:00.000+11:00

Well, today is world rare disease day. Today is all about creating awareness for people with rare diseases. And what do we want? Money? No. Commitment? No. Right now all we want is for you to like their Facebook page so we can draw attention to the cause of all rare diseases. Take it from me, it can feel pretty lonely having a rare disease, but we are not alone and here is why:-

There are over 7000 diseases in the rare disease database.

350 million people suffer from a rare disease.

That's 1 in 20 or 5% of the world population.

If sufferers lived in one country it would be the 3rd largest country in the world, bigger than the USA.

Less than 5% of rare diseases have any therapies or treatments.

75% of sufferers are children.

With so many sufferers it is time we made a stand and were noticed. By liking their Facebook page you can help make a statement to governments, insurance companies, pharmaceutical companies, medical researchers etc... That these people are not alone and cannot be ignored. You can like the Facebook page by clicking on the link below. It will take you 30 seconds.

http://www.facebook.com/globalgenesproject

Stay well:)

Chi Tour

2012-02-29T16:11:00.000+11:00

Some of the highlights of my tour of Chicago. I really like the snippet I got of the el. Stay Well:)

Update

2012-02-29T10:43:00.000+11:00

Since I normally write about all things medical, it is nice to switch from a tourist blog and have something to report to you on my treatment. I talked to Paula today and most of the tests that had been done were back in. On the positive, the neurologist had signed off on CIDP so from a disease point of view I've got the green light.

However, on the not so positive side one of my test results raised a red flag. I have not researched it yet so I am not sure if the result was positive, negative, elevated or whatever, all I know is that it requires further investigation. So tomorrow I am going for a bone marrow biopsy to check that I don't have a myeloma.

Now I guess the big question for me is should I be worried? At the moment I don't think so. I have only talked to Paula and she could only answer most of my questions, the rest will have to wait for Dr Burt. It is my understanding that many CIDP patients test positive for this test (which is called Serum Protein Electrophoresis or SPEP) so the further test is just a precaution.

One thing I am finding kind of strange is that I only heard of the news an hour ago and I am in for the test tomorrow morning. Normally I get the go for a procedure and the test happens about a month from now. It gives me time to process all of it, do my research and prepare and this time I have all of 18 hours to prepare.

Normally I whinge about the wait, but this time I am on the polar opposite side of the fence. I am almost being rushed. But there is no way I am going to complain about it. This is way more preferential than the wait. So forgive me for rushing off, I have to go and do some work. Stay well:)

Thank you

2012-02-28T23:30:00.000+11:00

A big thank you to every one who has wished me well. Whether it be by phone, e-Mail, card, on my blog, face book, twitter, google + or anything, I have really appreciated it. I apologise for not replying to everyone in person but your messages have not gone unnoticed. As I have said before in my blog going through a medical procedure can feel pretty lonely, especially when you are in a foreign city and the well wishes certainly do give me warm and fuzzy feeling. So, thank you to all. Stay well:)

I don't get it

2012-02-28T16:00:00.000+11:00

Here in the USA they love to advertise prescription pharmaceuticals. I don't have a problem with that, I just don't get it. Now I have to admit the ads are pretty lame, showing off a person who now has an amazing return to brilliant health due to this wonder drug. What I don't get if that to avoid a law suit they have to go through all the side effects. About two thirds of the ad is taken up saying how the drug could kill you, cripple you or turn you suicidal. There has to be a better way to market a product. An example is below. Stay well:)

Tour and Adler

2012-02-28T11:13:00.000+11:00

I have been busy. Chicago is a big city and I figured that the best way to see as much as possible was to take a bus tour around the city. So about Sunday lunch time I got on a bus driven by Leon for a four hour tour of the Windy City.

We started off heading south. We saw lots of magnificent buildings etc. I wish I could tell you more about it, but the guide talked so much I couldn't take it all in. We saw the home base ball stadium of the White Sox, the university of Chicago, Barrack Obamas home and all the museums.

We had a short break before we headed north where we saw much more of the city, Harpo studios, the home baseball ground of the Cubs and Lincoln Park. We then had a quick stop at the Chicago conservatory before we headed home. The tour was ok, but if I didn't get it free with the Go Chicago card I would have felt that the $40 cover excessive. I didn't think it was that good.

That night I was invited out again by Abby, to her house for dinner and to watch the Oscars. Again I overwhelmed by the generosity and warmth of the people here. It is not easy coming to a new town all by yourself, but when people are so willing to let you into their house it is so much easier.

The next day I had a wonderful outing when I indulged myself into one of my hobbies and took myself off to the Adler Planetarium. It was great. I saw a very fun and creative show on deep space, a 3D movie on the Sun, exhibits on Apollo, telescopes, astronomical observations through history, living in space the solar system and many more. Although it was great to see all these exhibits and take my time enjoying them I couldn't help thinking how much my son would love to see this stuff. If I get to bring them back for my sixth month evaluation we will definitely pay this place a visit.

Well tonight is a stay home night while I charge my stimulator. It will give me a chance to figure out what I'm going to do tomorrow. Until then, stay well:)

The Waiting Game

2012-02-27T10:20:00.000+11:00

Well I have officially finished the testing, now all I am doing is waiting for Paula to call me with my test results or the hospital to ask me in for more tests. All being well I will not need to go back until the sixth of March for chemo mobilisation. Until then I plan on using my time to see this truly majestic city and hopefully experience some of its magnificent culture.

On another note, I have to say it can be lonely at times. Experiencing a new city would be so much more fun if I had someone to share it with. I miss my wife and I miss my kids and I look forward to talking to them at the end of the day and telling them about what I had seen and done. Well for now with the medical stuff in a sort of hiatus, I guess my blog will turn more into a travel journal as I experience Chicago.

Yesterday I had a busy day. I have been amazed at the friendliness of all the people here from friends, to friends of friends, hotel and hospital staff and complete strangers, so getting around has been a breeze. In the morning I went to visit an old friend and her family. It was fantastic to catch up band we had a wonderful chat about all things past and present.

In the afternoon I took myself off to the top of the John Hancock centre. It is home to the worlds highest ice skating rink but I decided against partaking in that activity. The views up the top were magnificent, as shown in the pictures in my last post. If there was one positive about not having my family here it was that I could take my time and really take in the sights and listen to the David Schwimmer commentary. My kids like to rush around somewhere like that in less than 60 seconds and normally I have to follow. But yesterday I could take my time. However, it is but one little luxury and I would gladly trade it in to have them with me.

Following that, I was picked up by some friends who I found out lived in Chicago and we went out for Thai food. Again, I can't stress how nice the people here have been. Today I am planning on doing a bus tour of the windy city. I'll be sure to let you know what it is like. Until then, stay well:)

John Hancock Building

2012-02-26T15:28:00.002+11:00

I had a great day today, but I will tell you more about it tomorrow. For now, here are some pictures from the top of the John Hancock building.

Looking West

Looking South

Looking South East at Navy Pier

Centre Bottom is the Seneca Hotel, where I am staying

Looking North

Building shadows across the water

Stay well:)

It's cold today

2012-02-26T01:00:00.000+11:00

If my kids were here today they would have gone nuts! When I woke up this morning and looked out of the window it was snowing. The last time that I saw real snow was back in 2002. My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour. When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather. I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.

I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.

Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.

After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.

He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.

We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.

Well, that is about it for me today, until next time, stay well:)

A defining moment

2012-02-25T15:30:00.000+11:00

You know what? I was diagnosed with cystinuria in 1994. In 2000 I was diagnosed with CIDP. So technically I have suffered from those diseases for 18 and 12 years respectively. In that time, aside from my brother (who also suffers from cystinuria) I have not met one other person with either of the illnesses that I have. I guess that is one of the reasons that they both fall into the category of rare diseases.

But that all changed last Wednesday when I met Keith. Keith is a great bloke who has just finished going through the stem cell transplant process for CIDP and is currently on his way home for a little r and r. His story is quite compelling. He was in the airforce, and about 9 years ago in the post 9/11 era anthrax was all the scare. As an enlisted man he was made to have the vaccine, which probably caused his CIDP.

Meeting someone for the very first time that had the same disease that I did was as the title suggests, a defining moment. Having a rare disease can be a really lonely and scary experience. And although I have conversed with many fellow sufferers on the internet, there is something about meeting someone with the same disease as you that makes you feel a little less alone and makes the disease feel a little less scary.

Keith and I had a good chat about a lot of things from our backgrounds to the disease we share. What was really great for me was to talk to him about his experience with his SCT, although I do think that some of it may be a little unrealistic as I got the impression that Keith breezed through the process much easier than most people in the program. Still, it gave me a great deal of confidence.

Well Keith, it was a real pleasure meeting you. Best of luck with the recovery, I look forward to staying in touch and seeing how you are doing. I was thinking too, if you are struggling to find something to do in your post CIDP life, maybe you could try for a spot in the US team to the London olympics;)

Until next time everyone, stay well:)

The Seneca Hotel

2012-02-25T06:05:00.001+11:00

A glimpse of where I am staying. Stay well:)

How was my day

2012-02-24T14:07:00.000+11:00

You know, I gave it some thought and realised that my schedule is fraught with danger. The appointments are actually quite close together and if the first one is late, it could throw out my whole day, bouncing around from late appointment to late appointment. Fortunately, the day went really smoothly and again was very productive one.

I started off with a visit to the infectious disease expert, Dr Ison. One thing about North Western is they are so thorough it is borderline obsessive compulsive. Again I was asked to fill out some paperwork and check over the same information to check that I am really me. One thing I find funny is that the first question on the form is about insurance. I have to admit that the hospital and its facilities are probably the best I've ever seen, but I feel that those facilities might be out of reach without the proper insurance or finances.

After the forms a nurse showed me through to a consulting room where they took my vitals and quizzed me about why I was here to see Dr Ison, after which I was left by myself to await the good doctor. The next people who came into the room were the pharmacy people who wanted to write down my entire list of medications that I take on a day to day basis.

They then left and once again I was left by myself until Dr Ison came in. He was a nice man and we got straight down to business. Dr Burt was worried about the complications my brain stimulator might have on the transplant. Apparently implanted medical devices can harbour bacteria which could be a problem when you have no immune system. His main concern was that I would have wires exposed through the skin and since I don't he really wasn't worried. Personally, this for me was a huge relief. I had been worried about the implications because if an infection did manifest itself in my stimulator, it would have a short track right to the middle of my brain. It is still a factor for me, but at least now I am much more comfortable with it.

After then it was back to laboratory services where this time they actually had my order. I thought seeing that I had a bunch of blood work done back home in Australia they wouldn't need that much. I was wrong. I think there were actually 28 tubes. I had a great nurse and we got straight into it. After five tubes we were still going strong. After ten things were starting to slow down, and about the twenty mark we were really starting to struggle.

With just four tubes to go the vein dried up and alas I had to get stuck again. At least I have two arms so it was off to the other side and the rest was a breeze. The other great thing about it was I didn't have to wait long so I had time to go to the cafeteria for a quick bite before I finally got to go see the legend, Dr Burt.

Now I hate putting doctors up on a pedestal like that. I believe that doctors are people too and we need to test them to make sure that they are doing their job properly. But Dr Burt does fit the mould of legend. He is not just practicing medicine, he is writing a whole new chapter of his own. The work he is doing has the potential to help a lot of people in the future. However, doctors are people too and can have bad days and make mistakes. As a patient I believe that you have an obligation to make sure a doctor is giving you the best care available.

In Dr Burt's case I don't think there will be a problem. He seemed extremely knowledgeable and was very personable and engaging. Don't you just hate it when someone is that great in every way? He got the ball rolling by telling me about his trip down under and his little sojourn down the great ocean road. If you reading this Dr Burt, the Victorian Police department thanks you for your kind donation;)

What people said about him being fast was also true. Don't get me wrong he was thorough, but after Paula had taken my vitals (again) he came in and did his thing and left. I had questions to ask him, most of which we covered in the main part of the consultation but I only just got my last question in while he had one foot out the door. I feel quite comfortable being under his care.

Given the mix up of the first day, I have to say that the hospital has got an A+ for the last two days. Right now I have the joyful task of a 24hr urine test, which has rendered me pretty much hotel bound for the day. I have to keep the sample refrigerated too, so it is sitting on the second shelf of my fridge next to my water bottle. Man I hope I don't make a mistake:0

Until next time, stay well:)

My daily stroll

2012-02-23T11:43:00.000+11:00

I have been walking to the hospital every day so far and to tell the truth I am quite enjoying it, so I thought I would video it and share it with you all. According to google maps it is 0.4 miles and should take 8 minutes. It took me nearly double that. I hope you enjoy my ramblings. Stay well:)

A good day

2012-02-22T15:42:00.000+11:00

Wow, I have so much to write about I really don't know where to start. I think I will save my more quirky observations for next time and just tell you about my day. And it was a good day relatively speaking. Read on, I will explain.

Actually, I should have titled it a really good day. I started off meeting Paula in the hospital lounge. It seemed a bit odd meeting in the lounge, but in hindsight I have to say it was great. It was really nice to talk about what is up coming in an informal environment. I had also psyched myself up to talk about the less than perfect day I had the day before, but it was unnecessary. Paula mentioned it first, and the elephant in the room had vanished. From there we we free to talk about everything and anything stem cell related.

My next appointment was with the blood centre for a vein check. In all honesty I have to say that it was probably unnecessary although appreciated. I thought that they would check my veins for access or something, but no. It was just a meet and greet and a quick tour of the facility but very welcome. In a previous post I said that it would be great if you could a tour of a facility pre surgery and this is exactly what this was. Next time I go back I will know exactly where I am going and what is happening. It was very well appreciated and will make my next trip there much, much easier.

My last appointment was why I had a good day relatively speaking. Please don't get me wrong, the staff were fantastic, everything was punctual and everything was done to make me feel as comfortable as possible. But nerve conduction studies suck. My fellow CIDP readers would understand. And this was the most thorough exam I had ever had. I was there for over an hour getting electrocuted but it was necessary and when that is the case you just have to put up with it.

However, the best part of the day was still to come but I am going to keep you in suspense and tell you about that next time because I'm tired and I want to go to bed. Until next time, stay well:)

First Vlog

2012-02-22T11:42:00.000+11:00

I'm pretty proud of myself right now, putting this up puts me way outside my comfort zone. Stay well:)

A bad start.

2012-02-21T11:37:00.000+11:00

North Western Hospital has a reputation of being one of the best in the USA. Scratch that, North Western Hospital has a reputation of being one of the best in the world. Great doctors, fantastic staff, awesome facilities and ground breaking research. So why have they stuffed up everything I have had to do so far?

First, they managed to lose all the x-rays I sent to them. This was no biggy, I had copies of everything that I could easily resend. But as I said in a previous post, this is not enough to make me worry, but it does put a black mark against their name.

What is worse is that now I am 0 for 2. As requested in my transplant diary, I turned up at the Galter Pavilion, level 18, to have my labs done. I was in their system, but they did not have the order for my tests. So they sent me to the neurology department. But they sent me to the wrong one. I needed clinical neurology and they had sent me to cognitive neurology and I fairly sure I'm don't have Alzheimer's... Hang on where are we, I forgot. Just kidding;)

So from there I went to the proper department of neurology where I again received no assistance. So I decided to go to the department of immunology to see if I could clear this up. But I wanted the division of Immunology and autoimmune disorders. So off to department number five. This was Dr Burt's office, so finally after about 20 minutes they came back to me and asked me to come back tomorrow. Yes I was not very happy to say the least.

It is not all the needless running around that I minded, what bothers me is wondering what else they will stuff up. I mean if they can lose x-rays could they lose my stem cells? Or once I am neutropenic could they miss an all important blood test?

This may sound like a whinge, but I think it is extremely important. After all these administrative bungles are not that important.What is important is I need to feel confident so when I get heavily into it I'll not be worried about mistakes costing me big time. I will be talking to Paula about this tomorrow and I will be talking to Dr Burt about it Wednesday. Although I do not think either mistake was their fault, Paula is in charge of my scheduling and Dr Burt is the department head and they are responsible for my treatment and care. For Dr Burt this is one of the burdens of leadership.

Lastly I do not admonish myself from all responsibility. I know I have travelled a long way for this procedure, paid a lot of money and left my family behind, but it is my health and my treatment. I need to step up, reaffirm my faith in the hospital and make sure all will go well from here. There are an awful lot of mistakes in hospitals that could have been one prevented by a number of people, the patient included. I do not want to be involved in a mistake I could have prevented. Time to put my game face on. I need to be assertive, not aggressive. Stern but friendly. Until next time, stay well:)