At this point (April of 2010) it is clear that we need to get Mom to Boston or Mayo for a proper diagnosis. Since I had never ever sought out a second opinion for anything medically related, I was pretty clueless as to how one goes about doing that, especially given the fact that we weren't simply seeking out a local doctor for a second opinion, we were hoping to go across the country for a complete evaluation. After poking around the web sites of the amyloidosis centers at Mayo Clinic (http://www.mayoclinic.org/amyloidosis/) and Boston University (http://www.bu.edu/amyloid/) it seemed like the best thing to do was just call each place and actually talk to somebody. I already had a phone number for Dr. R's office at Mayo Jacksonville, but for some reason I called Boston first.
I called the main phone number for the Boston University Amyloid Treatment and Research program on April 26. I explained my situation to the person who answered the phone, and she explained the process for sending medical records and biopsy slides to Boston for them to analyze. If their analysis confirms amyloidosis they can schedule the three-day
evaluation. OK, fair enough. They want to focus on people with amyloidosis, so you need to have amyloidosis if you go there for an evaluation.
A day or two after contacting Boston I called Dr. R's office at Mayo Jacksonville. I again explained my situation to the person who answered the phone, but the phone call just didn't seem to go as well as the call with Boston. It wasn't really clear what my next step would be to get Mom into Mayo for an evaluation, and I didn't come away from that phone call with the same warm and fuzzy feeling I had after the Boston phone call. Maybe I didn't explain things as well or ask the right questions, or maybe the person I spoke with just doesn't get as much practice taking phone calls like mine, compared to the person at Boston.
In any case, I had a better gut feeling about Boston, and after talking with Mom about it we agreed to pursue getting her there for an evaluation. So we split up the tasks and spent the next couple of weeks getting Mom's medical records and biopsy slides sent to Boston. Lots of phone calls, faxes and emails involved with that, since we needed her records from at least five doctors and two pathology labs. We eventually got everything we needed to Boston, and by the end of May they had reviewed it and scheduled her for a two-day evaluation on June 14 and 15, 2010. Time to make some travel arrangements . . .
So it was starting to look like we would finally get some answers and have some idea of what treatment lies ahead, about five months after the initial diagnosis of amyloidosis from the kidney biopsy.