Comments: I was diagnosed as a Kaiser patient in October 2003 in Denver, CO after over a year of shortness of breath and so many x-rays I probably glowed. A biopsy was done on a nodule in my right lung and a smart-thinking lab tech tested it with Red Congo Dye after determining that I didn’t have cancer as previously thought by my surgeon and other doctors.
I went to the Mayo in Minnesota for a full workup and final diagnosis.
I then made appointments at Boston and am currently under the care of Dr. John Berk and had radiation on my right lung in 2006. There is still progression of the amyloid in my lungs and I return to Boston every 6 months for re-testing. I feel that if I were not being treated at a center of excellence, I would be in very serious condition.
Update – April 2009 – I went to my primary physician in Denver and had several tests run because of the return of shortness of breath – she told me to return to Boston as soon as possible due to what she sees as progression of my disease. I am still feeling fairly well.