Primary care doctor

On Monday I went to my primary care doctor, mainly to talk about the elephant in the room. I have never been to a doctor to specifically deal with my amyloidosis--only the symtoms. When Lon broke his leg last year can you imagine if he was treated for only the symptoms. "Gee, your leg is swollen. Let's put some ice on it." "You say it hurts, take some tylenol." "It still hurts? Take some advil with that tylenol." "You can't walk? Use a wheelchair." You get the idea. And finally when he sees an orthopedic surgeon who can actually do something, he hears, "So you fell down a hill and can't walk? Well, you're clumsy. You need to go to a clumsy doctor." (If you ever want to hear me do it with voices, let me know.) Unfortunately the nearest doctor is in Indiana. There are also doctors at the Mayo Clinic and Boston University.
I did find out that UCSF deferred my listing. I was so disappointed. They need to know which combo or ala carte I need--liver only, kidney only, or kidney/liver. They requested my kidney biopsy slides--why? I can't even fathom a guess (they are very tiny samples, together they measure less that 7 mm long and their diameter is less than a millimeter). They have been tested for different things multiple times. One of my blood pressure meds was doubled. That was about it.