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Mar 20, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

I am sorry to hear about your mother and fully understand your concern and worry. I am not a doctor and what I know about the disease I have learned in the past four months. What you are asking for none of us are able to answer. I can tell you that a late diagnosis is not a good thing. One question I have is has your mother had an echocardiogram? If she has had one your cardiologist should be able too provide you with a prognosis. My wife has AL and the number one problem I have had is the lack of communication between all her doctors. If you do not educate yourself on this disease you are not able to understand a lot of what is being said. It has multiple implications and organ involvement any one of which could fail if not caught early enough. It also sounds like you may have already got your answer and I would suggest that you spread the love with not only mom but all your family, and know that god is watching over you. These are hard times for you and your family and they will need a strong loving person like yourself.

Mar 19, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

Mar 16, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

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

Mar 13, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

Mar 4, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

Sorry for the delay, didn’t see your response until now. She is doing pretty darn good considering. She has had a kidney biopsy and a bone marrow biopsy and we have an appointment on the 7th to hear where she is at and to what degree the AL is has spread. We also have an appointment with the cardiologist this week to find out how much involvement in the heart. She is scared but wants the cards on the table so we can move forward with treatment. I want too say that this site has been invaluable for me and am thankful for what you all do.

Feb 23, 2019 · Diagnosed with AL Amyloidosis. What can I expect? in Blood Cancers & Disorders

Hi There, my name is Bob and My xwife was recently diagnosed with AL. Kind of in the same place you are now, looking for answers. One thing you need too know is you can’t believe everything you read about this disease. It effects each person differently. Sherry found out about her AL when she changed health plans. Thank God she did, because the first blood test reviled that her kidney function was only at 21%. We have been with our doctor for almost 14 years and found out she did nothing when her last blood test showed her kidney at 48%. She more then likely would not be doing dialysis at this stage had she been told. I would like too hook you two if you would like. Please let me know.