HSCT and Cystinuria

For those of you that don't know, I have had two main medical issues throughout my life.  CIDP, the problem for which I was successfully treated with HSCT back in 2012 and cystinuria.  A disease that means you get lots and lots of kidney stones.

Anyway, a few times I have been asked the question "Did HSCT also work for cystinuria too?"  A reasonable question ask but what is the answer?

The short answer is no.

The long answer in no.

Ok, ok that is a little facetious of me so I will elaborate.  When I was looking for new treatments for my ailments there were always two voices in my head.  First, the cold and logical part of my brain that asks for facts and questions the scientific theory.  The second is the voice driven by emotion.  A voice that clings to hope and is fuelled by desperation.

The question is, which one to listen to?  The answer is both.  When I first heard of HSCT I got very excited.  I was like a kid in a candy store that had just found the best chocolate bar in the world ever.  I then shared this news with my doctors who were much more sceptical.  Logic dictated that I should give up now as my doctors knew an awful lot more than I did.  But I was right to listen to my emotional side which told me to carry on.

However, I then had to listen to my logical side.  Ask myself questions like "What is the medical rationale behind this?" "What have the studies to date proven?" "What has come of the patients before me?"  In all three counts the answer was positive so I decided to go ahead and made what was absolutely the right decision.

But what has this to do with cystinuria?  The brain was ticking over at the time and I did ask myself "Could this help my cystinuria?"  My emotional brain wanted it to but my logical brain new the answer.  There was no medical or scientific rationale saying it would work.  There was absolutely no reason to think it so no studies had been done and nobody had been before me.  But still emotional Andy kept saying "but maybe..." I was going to have the treatment anyway

Unfortunately, logical Andy was right.  Since HSCT my CIDP has all but gone but I still have kidney stones.  In the last four years I have had six surgeries for stones and I'm sure there will be more to come.  So to my fellow cystinurics, unfortunately this is not the answer no matter how much we wish it was but I'd also say don't give up looking.  Keep listening to that emotional side that wants to find the answer.  There is a better treatment out there, dare I even say cure? And it will take both the logical and emotional voices in our heads to find it.

Stay well:)

Does HSCT work?

Firstly, to all my dedicated readers.  Sorry.  It has been way too long since I have posted.  I'll try to keep you more up to speed in the future.

But can you believe it has been four years since I had my life changing stem cell transplant in Chicago?  And yes! I really mean life changing.  If I have one regret it is that I don't have much video of me before my transplant so that I can compare it to now, so for the first part of this post I'll describe what I was like.

When I had my first evaluation with Dr Burt in February 2012 he asked me to stand up out of my chair without using my hands.  I did it... Just.  I had to shimmy along to the end of the chair so my centre of gravity was as directly above my feet as possible and with one mighty heave I pushed up.  Instinctively I tried to use my hands but was reminded not to but after about three seconds I was standing in a vertical position.

This was with no weights or hinderances either and I only just managed to achieve it.  Fast forward four years and after HSCT and a bit (ok a lot) of gym work I managed this:-

That is an 85 Kg deadlift and three reps to boot!  HSCT works people! HSCT works.  Stay well:)