Patient Comments: Amyloidosis - Complications

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

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: margarita rodriguez, 55-64 Female (Patient) Published: October 15

I'm 59 years old and I am diagnosed with amyloidosis. I have shortness of breath, fatigue, numbness in my leg and tingling in the ball of my foot.

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Comment from: sushil singh rajput, 45-54 Male (Caregiver) Published: August 19

I'm suffering from amyloidosis. My kidney failed, my brain has been affected, as well as my respiratory system. I'm now on life support (ventilator).

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Patient Comments

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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 kinds of treatment, including chemotherapy, have you received for amyloidosis?

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