Wednesday, June 27, 2012

Neurological Results

    The neurological tests were less than we had hoped for but about what we expected.  The objective indications show a worsening of nerve conductivity in both my legs and my arms.  This would be consistent with the growing numbness in my extremities that I mentioned earlier.  The neurologist was great and kept focused on things we can and should be doing to try to improve the nerve health and slow the progression of the disease:  try and stay active, get plenty of rest, and stay positive.  Check.

     She showed me the tests of my heart and it appears there is an increase in amyloid deposits there as well, but since she didn't have last years results to compare it to, we will be reviewing that tomorrow with the amyloid and liver specialists.  Jeanine and I are both doing surprisingly well under the circumstances.  The build up to this has been worse than the event itself.  In three years the amyloid hasn't spiraled out of control.  It has definitely been slowed by the transplant.  We plan to take it all in, process it, and move forward from here.  As my wise friend reminded me on the phone tonight, regardless of what we may be told from our doctors, always remember that there is a higher power at work as well that is not limited by our rules and limited understanding.

     If you are out there and interested, here is a link to an article that explains this disease and talks about some of the trials in progress to help curtail it:,PFE:US,WMT:US&tkr2=PFE:US&sid=aATh38ZCYp.4.  Unfortunately the FDA refused to fast track the Tafamidis approval, but I am exploring ways to try to get access to that drug which is now available in England.  We will be talking to them tomorrow about the other trials that are out there as well, but at the present time I do not think they are accessible by those who have already had their transplant.

    Hot and humid here today--over 100 degrees.  I understand it has been rainy back home.  We will bring the sun and warm weather back with us when we come home on Saturday.  Love, Rick

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