Sunday after dinner Randy's honey sat with us and went through my pile of test results. She is smart! She made things kind of, sort of understandable for me (no small task!) and showed us what different results meant. I really appreciated that.
It's official. I now have a primary care doctor, a kidney doctor, and an oncologist who have never had a patient with amyloidosis. It's been kind of scary. Well.....Randy called and
He happened to have a girlfriend who is a medical student, and
She happens to have a small group mentor, and
Who happens to take care of the amyloidosis patients at University of Virginia, and
Who happens to have a half hour to meet with us!
What an amazing tender mercy. He spent three minutes short of an hour with us. There are between 1,500 and 3,000 cases of amyloidosis diagnosed in the U.S. (at this point I'm thinking I should have played the lottery with those odds). He gave us tons of hope. He explained my kidney biopsy and it wasn't quite as grim as we thought. He told us that I was being treated the right way. Correct tests have been ordered and answers should be coming. (side note--the kidney biopsy was sent to Stanford for analysis. They found the amyloid bad stuff, but it wasn't behaving as is should have, so they sent it off to the Mayo Clinic).
It was such a relief to talk to someone with actual clinical experience. He also told us what kind of treatment to expect. Amyloidosis is so uncommon that there isn't even a standard therapy. All therapies are considered clinical trials. Yuck!
Still it was so good to talk to him and so generous of him to give us his time and expertise.
