This is the 4th edition of this journal about life while having been born in 1954 with a rare vascular syndrome – undiagnosed, even misdiagnosed, and then finally diagnosed at about 42. Declared inoperable I did not receive needed interventions until I was 63. I began writing a journal after at age 43. My doctor prescribed 20 hours a day in a recliner with 4 distinct one hour walk-about periods mixed in. [A quick note about today – I’m now 66 and walking about with regularity which is a key part of the Journey, one which I share with my wife, Dawne.
I heard the diagnosis Klippel-Trenaunay Syndrome for the first time in 1997 from a very experienced Vascular Surgeon from the La Jolla Scripps Medical Clinic. I fought the medical insurance industry from that day through 2018, finally taking up residence in Minnesota and abandoning California, in order to finally receive the comprehensive vein mappings and respective medical-surgical interventions La Jolla Scripps called for in 1997. I was 63 years old. My medical heroes who intervened three years ago are a medical team at the Gonda Medical at the Mayo Clinic in Rochester.
It took my doctor bringing my wife, Dawne, into the examination room to convince me that my work career was over, that my youth soccer coaching days were numbered, that life as we knew it was about to take a radical turn.
This is the 4th time I am visiting the design and content of my online journal. I’m here to update it, to better communicate what I have experienced and learned. It’s a personal journey with all the emotions and all the warts, including a layman’s best efforts to present “street explanations” and open sourced medical references and resources.Bill
more . . .