For some reason I created a Word file that day with my notes from this appointment. Here they are, almost verbatim:
- Bone marrow biopsy looks good. No sign of amyloidosis.
- Blood test results don’t indicate amyloidosis.
- So far the amyloids have only been found in the kidneys, but we don’t know why yet.
- No need to rush into aggressive treatment at this point.Dr. C will review the kidney biopsy.
- Dr. C will consult with Dr. V (kidney doctor) and with a local amyloidosis expert, Dr. S.
- May need to go to Mayo Clinic for evaluation
I remember Dr. C telling Mom her bone marrow looked just fine, like that of a 15-year-old. We were not expecting to hear that. I had heard of Dr. S in my internet research, and Dr. C said he knew him personally. Supposedly Dr. S is a local doctor who was a prominent researcher in amyloidosis at one time, but he's not seeing patients any more. Dr. C also mentioned having the pathologist take another look at the kidney biopsy, but he warned us that pathologists typically don't move very quickly, so it might take awhile to get anything back from them.
In a way it was frustrating to come away from this appointment without a clear indication of what Mom really has and how to treat it, but I understood Dr. C's reluctance to start any treatment without knowing exactly what is being treated and what is the expected outcome. I was also pleased to hear him mention the possibility of going to the Mayo Clinic, since that was an indication that he is willing to get help when he needs it.
So in my mind Dr. C is still the quarterback at this point, although he can't really go on the offensive just yet because he doesn't know what he's attacking. Let's be patient see what happens over the next couple of weeks . . .