NOTE: Ernie passed away June 17, 2010 from a stroke not related to Amyloidosis. Below is his survivor story.
TYPE OF AMYLOIDOSIS: AL Amyloidosis
WHERE TREATED: HDT/SCT Boston University Medical Center
COMMENTS: As with most of us Amy patients, diagnosis was not quick in coming. After a continuing decline in health with no answers from the medical community, I had a spontaneous spleen rupture, requiring emergency surgery. Fortunately, the surgeon realized that the spleen was completely abnormal and called in a hematologist who said "this could be amyloid". He had never seen a case, but ran the appropriate test through a bone marrow biopsy and confirmed the Amyloid. He then told me that there was no treatment and I that I had about 18 months to live. This was about Oct 1, 1999. Thanks to the links on the web site Amyloidosis.org, my wife and daughter contacted Boston University Medical Center and we went there for an evaluation in February of 2000. After participation in a clinical trial, I was scheduled for the High Dose Chemotherapy and Stem Cell Transplant beginning in May of 2000.
I returned to working full time 8 weeks after returning home after completion of the treatment and continue to have a complete response to the treatment. I feel outstanding and continue to be free from any production of Amyloid. In fact, in my case, there has actually been some improvement in the condition of my heart, improvement in the condition of my kidneys, and my liver is completely normal.
I consider myself extremely fortunate and I am tremendously grateful to the staff of BUMC and their Amyloid Treatment and Research Program.