Patient Comments: Amyloidosis - Complications

Describe the complications of amyloidosis experienced by you or someone you know.

Comment from: Rachel, 55-64 Female (Caregiver) Published: August 15

My mother was diagnosed with amyloidosis at the age of 62. She was diagnosed due to extreme amounts of protein in her urine. It quickly affected her heart and she had shortness of breath. Her lower extremities began to swell and would even seep. She passed away at age 66 with kidney failure. Very painful disease and I hope treatments are improved and more studies are done!

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Comment from: Gene, 75 or over Male (Patient) Published: December 13

I was just diagnosed with amyloidosis affecting the lungs. I have low oxygen level and I am on oxygen 24/7. I am out of breath easily with the slightest exertion. I have been active all my life, gym 3 times a week, until I noticed I was having shortness of breath. The doctor had diagnosed me as having spots on lungs. He said if I had been around asbestos he could tell me what it is, but I have not been around asbestos to any extent that I know of. I have installed wool fiber in walls as insulation but not asbestos. I have not been told of any treatment as yet.

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Comment from: Hannah, 55-64 Female (Caregiver) Published: September 05

My mother-in-law, age 64, was diagnosed with amyloidosis in the spring after she went for a checkup and her doctor noticed that her urine was foamy. The disease was in her kidneys, but they estimated only about 10% of her kidneys were affected. She worked full time and was socially active. She has since had treatment in July at a major research hospital with chemo and a stem cell transplant. It has not been successful. Her kidneys failed, and she is now on dialysis. Her anticipated hospitalization of two weeks turned into a month. The doctors are very puzzled as to the cause of the failure. She has been transferred to an acute care facility closer to her home for dialysis and physical therapy. She has constant nausea and eats very little. She is not walking without assistance. After a kidney biopsy, it appears that the amyloidosis has spread in her kidneys and may have spread to her stomach now. She is to have upper and lower GI tests later this week.

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Comment from: howard5091, 45-54 Female (Patient) Published: July 15

My husband has had numerous medical problems, he has kidney failure and elevated levels of protein in the blood. His cholesterol was very high as well as his blood pressure, he's in a lot of pain; it swells from his knee to his ankle and hurts terribly. I am very scared he has amyloidosis. He is going to a specialist in September. We currently have no health care and can't get it until January. I am so worried about what I am reading about this disease. I am not sure we can get the treatment due to no health care.

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Comment from: Martizet, 55-64 Female (Patient) Published: May 23

I am sixty-two years old, and previous to this at 59, I was told that I had protein leaving my system and was treated with pills of cortisone, which seemed to help for a while. I got off of my medication and upon moving to another state and getting to a doctor to finally be seen for things again, I have found that I am on stage one of amyloidosis. I didn't think I was having any problems, but foamy urine tells that I am losing protein, and the swelling of the lower legs in my feet have gotten extremely bad. Otherwise, I have to say that I feel rather great. I go to college two nights a week, and do chores in the house as normal as can be. I have since started chemotherapy twice a week, and have gotten lucky with not being ill, and hope it continues through the rest of my chemotherapy treatments of which there are to be a total of 15 or 16. After that? There is talk of stem cell as a way to help. I feel healthy and notice some things that are changing, like the swelling of my feet and seemingly my female extremities kind of are enlarging I believe. My stomach sometimes bloats the first four days of chemotherapy, which is irritating, but tolerable. I feel lucky for some reason. I feel like there is a chance that this might get turned around.

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Comment from: DEVASTATED, 65-74 Female (Caregiver) Published: September 30

My mum has just died from amyloidosis. She was diagnosed 8 weeks ago and passed away 8 weeks later. I am still in shock. She suffered terribly at the end and I do not wish for anyone to go through this with their loved ones. It's a terrible disease and I hope that they find a cure for it.

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Amyloidosis - Symptoms Question: What symptoms did you experience with amyloidosis?
Amyloidosis - Other Illnesses Question: Please describe any other illnesses you have suffered in addition to amyloidosis.
Amyloidosis - Treatment Question: What treatment has been effective for your amyloidosis?

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