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Monday, July 23, 2012

How did I do it?

First I just want to say that the amount of positive feedback I got on my last video post was amazing.  Among all the feedback was a question about how did I do it?  It is a great question because it is not nearly as simple as filling out a form and sending it in.  The whole process from learning about the treatment to my transplant date was about nine months.

Firstly, I think it is important to acknowledge the work of Dr Burt and his team.  Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP.  Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before  me.

But where did I start?  I first learnt about the procedure on an online forum for CIDP in July 2011.  I was extremely enthusiastic about the treatment, but at the same time very cautious.  In a way I was almost sceptical.  I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.

So I started research.  I looked at the process and the theory behind the procedure.  To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines.  Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD).  On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done!  I encourage everyone to do their own research.  This is a super critical point that I believe everyone should do to benefit themselves.  You are not doing it for anyone else, so you have to be comfortable about what you are signing up for.  I really think that this is such an important step.  I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process.  I plan to devote a section of my book to this topic when I finally have it finished it.

My next step was to contact DIAD to see if I would qualify for the trial.  They had a list of requests as long as your arm which was fair enough.  Medical history, CIDP history, medications etc...  To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago.  I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.

DIAD website

When they received the data they had two more requests.  First, they wanted me to get some tests done and second, they wanted to know I could pay.  All up the cost was about $135,000, not including travel, accommodation and other living expenses.  There are a variety of options to get the money.  US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash.  Luckily for me I was able to do that.

After they received my results the asked me to come to Chicago for more tests and hopefully a transplant.  I was booked in and given a timeline.  I had to arrange all my own transport, accommodation etc, but it was worth it.  Until next time, stay well:)

1 comment:

  1. Heartenig to read your feedback and as always, thankyou.