Hi, I am 50yo male living in Adelaide, South Australia.
I have recently (last week) been diagnosed with “Amyloidosis Amyloid P”.
I presented to hospital due to recent weight gain in fluid, weakness and very a swollen body from the waist down.
My symptoms, nephrotic syndrome with swelling from my rib cage down to my feet. My bloods were showing low albumin levels and my urine showing high albumin..
after twice daily injected diuretics for 5 days and daily albumin intravenous infusions for the first 3 days, I lost 8kg of fluid in the 5 days spent in hospital.
i received extensive testing and analysis by rental, heart and blood specialists. Testing included, kidney and bone marrow biopsies which revealed Amyloidosis after red Congo dye showed fluorescence. Initial thoughts were leading to a diagnosis of Amyloidosis AL however after my symptoms were found to only include one organ, my kidneys with protein deposits, further staining of the biopsies prompted the re-diagnosis of Amyloidosis amyloid P.
My renal doctor has explained in detail my diagnosis. He says it is very very rare. He said that I am lucky because treatment with chemotherapy plus an antidote is available, and full re,idiom is possible.
However he is unsure about the dosages and drugs needed as yet because of the rarity of the disease, he is consulting with professors in the UK, Australia and New Zealand for recommendations.
There is very little, if any, literature available online or other related to my specific disease.
is there anyone else out there that has this diagnosis? If so, it would be great to connect and share experiences.
