Am I Fickle?

One of the luxuries of being a patient is that you have the luxury of being treated.  You can decide your favored treatment option and then change your mind right up to the eleventh hour.  You can change your doctor of preference as and when you please without a good reason if that is what you wish to do.

Now I certainly don’t recommend that this is what you do, but if there is a good reason for changing your mind you should be aloud to do so.  And realistically that is what I have done recently.  Twice in fact.

Now just to clarify, my recovery has been going really well and I am more than happy with the way things have been progressing, but you don’t have something as major as a stem cell transplant and expect everything to go perfectly.  And I have had my speed bumps.  They haven’t been huge or insurmountable but they are there.

The first and biggest problem is this horrid carpel tunnel syndrome (CTS) that has been creeping up on me and slowly getting worse over the last couple of months.  I’m convinced it is different to the arm pain that I experienced before my transplant, the symptoms I have now are typical carpel tunnel symptoms.  Before my whole arm from below the shoulder hurt.

So the question is what to do and what is causing it?  Well although the clinical diagnosis of my symptoms is CTS the doctors like to confirm with a more objective test.  This would normally be a nerve conduction study but the remnants of my CIDP would mask any conclusive data that I received from this test.  They could do an MRI of my hands but MRI’s and brain implants don’t really mix too well.  So I have to revert to the clinical diagnosis.

It is also important to decide on a treatment option.  And this is where we run into difficulties.  In my transplant notes regarding my recovery it says not to have any surgery within one year of my transplant date.  But most of my doctors here agree that carpel release surgery is the best way to go and my neuro here in Melbourne (who is normally very conservative) is actually pushing for it.

My GP has proposed a short-term solution of cortisone injections.  And here comes my first fickle moment.  To date I have followed the instructions of the people in Chicago, but I believe that I need the surgery.  Research shows the longer CTS goes untreated the greater the chance of long term or permanent damage.  So I think I am changing my mind about following the Chicago instructions.

The second fickle moment is to do with my prophylactic medication.  I have been advised by the good people in Chicago to stop taking Bactrim, an antibiotic, as it has been six months post transplant.  However the hematologist I see in Melbourne has had a look at my blood count and said that while my white blood count is fine my lymphocytes are still very low and I should continue with Bactrim to avoid chest infections.  So again my fickle nature has ignored the advice of the good people in Chicago and gone with the doctors here in Melbourne.

But honestly, is it really fickle?  I have weighed up my options, done my research and made my own decision.  One thing that hasn’t changed is I have always taken responsibility for my health and ultimately I will make the decisions about my treatment.  I am right or wrong?  Only time will tell.  But I guarantee you this.  I going into this with my eyes wide open.  Well, until a general anesthetic anyway.  Until next time, stay wellJ