I came to this appointment with a list of questions such as what treatment is recommended, how soon does she need to start, what's the likely progression if nothing is done, are any other tests needed at this point, etc. In retrospect we were probably hoping for a little too much at this first appointment, but after researching this disease on the internet for two months, reading about stem cell transplants and chemotherapy, and printing a stack of paper about two inches tall for Mom to read, we knew we needed to do something and we needed to do it quickly.
Doctor C first gave us a very simple, understandable lesson on what AL amyloidosis is. I won't even attempt to duplicate it here, but the gist of it is that you can think of the bone marrow as the factory that makes blood, and the factory has a little quality control problem. (That's my over-simplified analogy, not his.) Anyway, it was very understandable at the time. He then told us he had looked at some of Mom's bloodwork, and he wasn't seeing what he would expect to see in the blood of someone with amyloidosis. But he cautioned that you can't really make a diagnosis of amyloidosis from bloodwork alone, so the next step would be to do a bone marrow biopsy.
So although we didn't come away with a treatment plan after this appointment with Dr. C, I felt like we were in good hands and the bone marrow biopsy seemed like a reasonable next step to take. I liked Dr. C and I had no qualms about him being the "quarterback" in terms of directing Mom's treatment plan, since all of her doctors would need to be involved.
Next up, my first local Amyloidosis Support Group meeting.
Doctor C first gave us a very simple, understandable lesson on what AL amyloidosis is. I won't even attempt to duplicate it here, but the gist of it is that you can think of the bone marrow as the factory that makes blood, and the factory has a little quality control problem. (That's my over-simplified analogy, not his.) Anyway, it was very understandable at the time. He then told us he had looked at some of Mom's bloodwork, and he wasn't seeing what he would expect to see in the blood of someone with amyloidosis. But he cautioned that you can't really make a diagnosis of amyloidosis from bloodwork alone, so the next step would be to do a bone marrow biopsy.
So although we didn't come away with a treatment plan after this appointment with Dr. C, I felt like we were in good hands and the bone marrow biopsy seemed like a reasonable next step to take. I liked Dr. C and I had no qualms about him being the "quarterback" in terms of directing Mom's treatment plan, since all of her doctors would need to be involved.
Next up, my first local Amyloidosis Support Group meeting.
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