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Old Yesterday, 05:33 AM
 
Location: SW Florida
9,322 posts, read 4,082,720 times
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Does anybody here have Amyloidosis or know anyone that does? My mother was diagnosed about 2 years ago and was doing pretty well until the last month or so when her hemoglobin dropped to 6.9. I think 12 is the norm. Her amyloidosis was found because of too much protein in her urine and her oncologist told her if she was going to have it somewhere the kidneys was the best place to have it.


She shows no signs of internal bleeding and she had a transfusion of one unit of blood two or three weeks ago and I'm taking her this morning for two more units. Is this just part of the disease? We're not getting a whole lot of answers from her doctor. By the way she is 83 and feels so weak and tired because of the low hemoglobin. She told me yesterday she didn't think she was going to make it to age 84 and she has always looked well for her age and doesn't have a lot of the typical senior illnesses. We are starting to get concerned; we were told from the beginning that amyloidosis is not curable but it is manageable. Can any of you shed some light on this disease?
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Old Today, 09:39 AM
 
1,507 posts, read 1,416,931 times
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Originally Posted by chiluvr1228 View Post
Does anybody here have Amyloidosis or know anyone that does? My mother was diagnosed about 2 years ago and was doing pretty well until the last month or so when her hemoglobin dropped to 6.9. I think 12 is the norm. Her amyloidosis was found because of too much protein in her urine and her oncologist told her if she was going to have it somewhere the kidneys was the best place to have it.


She shows no signs of internal bleeding and she had a transfusion of one unit of blood two or three weeks ago and I'm taking her this morning for two more units. Is this just part of the disease? We're not getting a whole lot of answers from her doctor. By the way she is 83 and feels so weak and tired because of the low hemoglobin. She told me yesterday she didn't think she was going to make it to age 84 and she has always looked well for her age and doesn't have a lot of the typical senior illnesses. We are starting to get concerned; we were told from the beginning that amyloidosis is not curable but it is manageable. Can any of you shed some light on this disease?
My late FIL had AL amyloidosis (There are several different kinds) Treatments vary based on the form the patient has. MY FIL was treated with chemo. He also had low hemoglobin once and that was treated with iron infusions weekly for several weeks.



We were told that generally speaking low hemoglobin is rare with ALA but when it involves renal function, it happens without excessive bleeding and so forth.
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