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Old 07-16-2013, 04:57 PM   #1
MissSouthernLady
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Default What is Amyloidosis

My grandma had been having some blood pressure issues and she went to the heart doctor for some tests.

The first couple of test came back that she had had a heart attack at some point but that it did not damage her heart. However, one test was done and it concluded that she had an amyloid around her heart. The cardiologist then ordered a fat pad biopsy to see if there were anymore amyloids in her body.

My dad and grandma both think that the fat pad biopsy is to determine if she has amyloidosis. From what I have read though the test that they did is to determine what type she has. This disease has terrifed me the more I read about it because my grandma has several of the symptoms.

She just turned 80 and has been in perfect health up until the blood pressure incident. Wingz, have you studied amyloidosis at all?
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Old 07-16-2013, 08:33 PM   #2
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Kel you are correct the biopsy was to determine type...the word amyloidosis is used for anyone that has amyloids (proteins)....if they checked more than 1 area they are trying to see if it is local to around the heart or if she has other tissues that the abnomal protein is around. this is not something that occured overnight but until symptoms occur wouldn't be routinely tested for & that doesn't usually happen until after a major medical problem occurs........so part of it was prob there when she had the heartattack but until the heart was stressed by the blood pressure problems & she sought medical help it went undected. The type she has will determine treatment options available.

I am so sorry that your grandma is ill.
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Old 07-17-2013, 06:47 AM   #3
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Thank you Sassy! All of this is so totally unexpected. All she was having was some blood pressure issues where it would drop really low. We thought it was a side effect from some eye drops that she was using for her eyes that the doctor prescribed.

We don't know when she had the heart attack. They called it a "silent" one. She has started showing other signs of the disease though. She will get really weak all of the sudden and not know why.

She took care of my granddaddy for over 5 years with Alzheimer disease. Even when we had to put him in the nursing home in October of 2009 she went everyday and feed him until he passed away in Dec 2011. She was the picture of health and now this has happened and it is scary.
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Old 07-17-2013, 07:06 AM   #4
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What are the symptoms of this disease?
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Old 07-17-2013, 07:19 AM   #5
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Symptoms of Amyloidosis


Quote:
Swelling of your ankles and legs
Weakness
Significant weight loss
Shortness of breath
Numbness or tingling in your hands or feet
Diarrhea or constipation
Feeling full quickly
Severe fatigue
An enlarged tongue (macroglossia)
Skin changes, such as thickening or easy bruising
Purplish patches (purpura) around the eyes
An irregular heartbeat
Difficulty swallowing
Protein in the urine (detected by urine tests)
http://www.mayoclinic.com/health/amy...CTION=symptoms
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Old 07-17-2013, 07:54 AM   #6
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Part of the reason that you don't hear more about this is because many of the symptoms are "general or common" for other problems so having a couple of symptoms is not going to point them to this right off the bat so it is not usually found until something major is going on.

I will add that the type could be important for you to know since there is one that has genetic component you may need to be aware of Kel.

I am sure that when wingz sees this he may respond with better information since my response is that of a nurse and not a doctor!! I would also suggest that you write your questions down & ask her doctor using that for you to take notes on the answers because many times we forget we wanted to ask something or the answers spur more questions.
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Old 07-17-2013, 08:15 AM   #7
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Thanks for the info Sassy!
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Old 07-17-2013, 08:39 AM   #8
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Thanks Sassy! My mom and I have been researching the different types of amyloidosis and the treatment.

My grandma has said that if she has it (which she does or they won't have ordered the fat pad biopsy) that she would not take chemo treatments. I knew that she would say this when I started my research. She remembers when her daughter had lymphoma and leukemia and had to have chemo.
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Old 07-17-2013, 09:38 AM   #9
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When I worked the senior center I had a client, different diagnosis but same treatment, that told me she would not undergo chemo because she wanted to spend her time living not just exsisting to postpone her death.
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Old 07-17-2013, 01:17 PM   #10
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Sassy has pretty much said what I would say. In terms of the symptoms of this disease, I wouldn't focus on that list. It is very general AND you won't see all. Also having some of those symptoms does not mean you have amyloidosis of any kind, if that makes sense.

At this point, the biopsy is what will make a difference going on out. Sometimes the treatment is as simple as changing diet and starting diuretics to make the heart have less stress. Pills may be added to help with the heart rhythm, etc. It's hard to say what will happen without knowing the make up of the protein.
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