← Return to Diagnosed with AL Amyloidosis. What can I expect?

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@rosemarya

@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

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Replies to "@bob100, I am going to tag @colleenyoung so that she will get a noticication that you..."

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused