January 2013

This month I saw my cardiologist in Seattle who is tracking my health.  The report for my heart, which was transplanted in Sep 2009, is that all systems are functioning great.  This comes as good news.  Last year during a heart biopsy, it was discovered that the Amyloid protein has been detected in my transplanted heart.  So far there are no indications of thickening of the ventricle wall of the heart, which compromises the heat function.  The ejection fraction, an index of how the heart is moving blood, was at 70%, a very good number.  So at this point, my cardiologist has concerns with the presence of the plasma dyscrasia cells in my bone marrow that are generating the Amyloid proteins.  These protein chains will “gum-up” the heart muscle, nerves, the GI system and damage blood vessels.  The damage to my blood vessels is expressed with my hypotension; a very low blood pressure.  I am currently taking two medications and drinking fluids to get my blood pressure higher.  My doctor told me generally he sees patients that have high blood pressure.  His advice to them is to stay clear of salty foods.  I was told a good pepperoni pizza may be the medicine I need to build up my blood pressure. 

During the comprehensive review of my last stem cell transplant in December 2012 it was clear that the disease still is lingering in my bone marrow.  There is discussion as to what the next step in treatment is among a team of doctors in Seattle and my local oncologist in Wenatchee.  While no one has told me there is a schedule for my treatment, I expect there is interest in getting me back on chemo to push back the generation of the Lambda Free Light Chains (λFLC).  I would favor a mild approach to reduce the deposition of the λFLC in my system. 

I came across this excellent explanation of the three major forms of Amyloidosis from Tufts Medical Center in Boston.  If you go to this page (click the above link), look at the symptoms for AL Amyloidosis.  Most of these I have expressed in this blog over the past four years.  Anyway, thanks for checking in on my fight with this disease.  At the bottom of this blog page is an application, ClustrMaps, which logs the location of those who visit this blog.  I have regular followers who are complete strangers to me.   To those who visit from Italy, France, the Scandinavian countries, Australia and the mid-west of the United States, I do not believe we have met.  But thanks for your interest.

I have included for this blog a photo my father took in October 1945.  He is on a troop transport ship that is returning to San Francisco from the South Pacific after the Second World War ended.  Many of these men wondered if they would ever return back to the states.  Here they are just about ready to go under the Golden Gate Bridge.  Within hours they would be reunited with their wives and families that have been away from for years.  The picture practically has a spiritual feel to it of home coming.  This photo of my dad’s is one of my favorites.