Tuesday, May 15, 2012

Is it working?

What a massive question.  It has now been a month since my transplant so I have been asking whether or not I have seen any improvement.  And my answer.....  I'm not sure.  I will elaborate further in a minute, but first I want to answer a different question.  That question is if I didn't work am I still glad I did it?

The answer to that is much more simple.  Unequivocally, yes.  Why?  Well for a couple of reasons.  It is not in my nature to stop trying to find a treatment that will make me better.  I couldn't leave such a promising treatment alone.  I had to try.  Second, I could have waited ten years to have the procedure when hopefully it would become a mainstream treatment.  If I had done it then and it worked I would probably feel bitter about the ten years I had lost to the disease.  Also, knowing that there was a treatment that could work that I hadn't tried would eat at me.  At least if I tried and it didn't work I would know and I can move on.

Now back to question one.  Why am I not sure it has worked yet.  There is evidence that I have seen slight improvement, but I guess the lawyers would call it circumstantial.  So what evidence do I have?

First, the sore arms I had nearly every night have all but disappeared.  If anything I just get a small tingling in my fingers but it does not wake me or hurt.

Second, I may have a slight increase in movement when I do some exercises.  When I try to stand on my toes I have a slight bit more elevation than I used to and if I try to jump I can actually feel a bit of space between my feet and the ground.  However, I have recently lost eight kilos so the difference in weight could be what is allowing me to achieve this.

Third, a couple of my friends have said that my voice sounds better.  And by better I mean clearer and steadier.  I also have slightly improved bladder control.  Now, let me clarify, I wasn't going around wetting myself but I was finding that when I felt the urge I had to go quite quickly.  I have found that recently I have been able to hang on longer and retain more fluid too.  I was never sure if this was a CIDP thing or a drawback from all the kidney surgery I have had.  Honestly I think it is a little bit of both.

So, why am I still not sure?  The results if real are incremental  at best and if I think about it rationally I have to question the validity of the results.  It is all subjective data and emotionally I really want it to work.  I really, really want it to work and my rational mind must ask whether this compromises my objectivity?  Damn my rational mind!  It would be so much nicer to live in ignorant bliss and convince myself it was working.

Anyway, I have made a solid mental note of where my capabilities lie so when I retest myself I will have something solid to compare to.  But before we crack the champagne I think it best to wait for some more definitive proof.  I'll keep you posted.  Until then stay well:)

1 comment:

  1. Andrew, praying for you...My understanding it will work but will be subtle and then all of a sudden u realize yes this did work..The best to you..Nancy