Discovery of the problem

A week after the heart biopsy (now mid-February 2009) we were back in Seattle to understand what it was that I had.  I was getting tired of not knowing the cause but watching my decline in health.  Dr. Olsen at Swedish came into the exam room with a blank look on his face.  Rose knew before he said anything that it was serious.  He told us they the results from the heart biopsy showed the problem, but it was not good news.  I had a condition called Cardiac Amyloidosis, a rare heart disease that affects four people in a million.   A protein is filling any gaps between the individual cells of the heart tissue and making the heart stiff so it can not longer function as a pump.   This was the reason I was short on breath.  He told us that in 10 years of practice, I was his second case of this.   He also said today there are treatments, where there was nothing that was being done until very recently.  He told us there was some work on this being done at the University of Washington, but other centers such as the Mayo Clinic and back in New York are more aggressive in their programs with treating the Amyloid issue.   Olsen was going to arrange to get us in to see the cardiologists at the UW who was working on this for a consultation.  

Now that we were getting ready to be handed off for the second time, it was more clear that I was not experiencing your garden variety heart disease.  A appointment with Dr. Fishbein at the UW for the end of February 2009.