Follow up wrap

Well it's all done and dusted in Chicago now.  A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt.  I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.

However, although I would have to classify the trip as a success I still feel a little disappointed.  Allow me to elaborate.  This is my second evaluation.  When I had the first one the results were nothing short of spectacular.  Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.

In this my second evaluation I was hoping that this steep upward curve would continue to climb.  I was expecting improvement albeit not as much but alas, there was none.  On the plus side, there was no degradation either.  But still, I couldn't help but be a little disappointed.  The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it.  The improvement plateaued and there it has remained.

It's not all bad though.  For the first six months post HSCT I had significant marked improvement.  This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.

This actually solves the biggest issue I had prior to HSCT which was the uncertainty.  I never knew what the next stage in my disease progression was going to be or when.  Now I know what to expect. I can move forward knowing what the future holds.

The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage.  Was it all worth it.  You Bet!  I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.

Until next time, stay well:)

Back in Chi Town

Can you believe it has been over two years since my transplant?  Neither can I.  But I'm back in the Windy city for a follow up and I have to say it is fantastic to be back.  Chicago is a fantastic city and I have many fond memories.  So far I have caught up with many old friends and seen Dr Burt.  I got the feeling he is really excited about how far his research has progressed.  He didn't tell me as such but I got the feeling that he is soon going to publish or finish some of his studies and will be announcing to the world some magnificent results.  But then again I may be wrong.

In terms of my follow up they were amazed at how well I was doing.  They had me fill out a bunch of disability scales and all the scores were either 1 or 0.  I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.

On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle.  It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction.  He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.

As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain.  And I mean it poured.  They turned the rain all the way up to eleven ;)  Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter.  I also have my NCV and EMG today.  I'll keep you posted on how that goes.

Stay well:)

Two years

I am pinching myself.  It has now been two years since I was in Chicago having my stem cells infused back into me.  Ironically, the day seemed a bit like a non-event.  After all the drugs and chemotherapy they put into me over my three week hospital stay the stem cell infusion seemed like just another hospital day.

What is important is the two years since then.  My recovery has been better than I ever imagined.  For 12 years I was not able to run.  Three months after my HSCT I could run again.  And the improvements have not stopped there.  The best things are I feel like I have become a better husband, father and person.  I can play with my kids, I can lift the groceries out of the car and I can walk down stairs without using the handrail.

But even today I noticed something I did that I hadn't been able to do six months ago or for the last 14 years for that fact.  Currently I'm holidaying on the Gold Coast with my family and today we were at White Water World.  Kids being kids had sprinted to the queue and were (im)patiently waiting by the time I got there.  The quickest way for me to get there was to duck under the railing.  Six months ago that would have been an effort but as always seems to happen, I ducked under the railing and didn't even realise it until it was over.  I then managed to carry up the floaty for my daughter and I by myself!

Anyway the last two years have been two of the best of my life and I'm going to take this opportunity to thank some really special people.  First and most importantly my friends and family who have supported me on this journey.  It is amazing to see the smiles on their faces when they notice my improvement.  A special thanks must go to my wife, my parents and my inlaws.  They say that family will always be there for you no matter what and that is so true.  To Dr Burt, Amy, Paula and all the other staff at North Western, the care I got was faultless and without your tireless effort I never would have been able to achieve my results.  Lastly to my new Reset friends and colleagues who are working tirelessly to see HSCT be available to all Australians suffering from sever autoimmune diseases and promote the treatment worldwide.

Until next time, stay well:)

Dr Burt

Dr Burt is one of the best doctor I have ever had the pleasure of consulting with.  After all, he is the doctor responsible for my HSCT which has quite simply changed my life.  However, even after all the good work he has done there are still naysayers out there that are very sceptical of the process.  They should watch this video as it identifies the benefits of HSCT and answers most of the questions that the critics raise.  This is not me saying it.  This is one of the most qualified and forward thinking doctors in this field with an outstanding reputation to boot.  Hopefully getting this message out will allow the treatment to become much more available to more people and make a huge difference in the lives of many.

Enjoy and stay well:)

http://www.youtube.com/watch?v=5SmLUYomArI

http://www.youtube.com/watch?v=rOlk_-5QcDI

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:)

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

Biopsy

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:)

Update

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:)

How was my day

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:)

More on stem cells

Yeah, I get it.  It's a PR movie for adult autologous stem cell transplantation.  I've worked in advertising for a long time, so I know all about it, but as a potential recipient of an SCT I have to say I am very excited.