An insightful message. I was diagnosed of HoCM in February 2022. I started taking medicines like Concor, Atorva + Ecospirin, Ivabrad, Jardiance to prevent the stiffness of heart LV. The further diagnosis resulted into the prognostic significance of AL Amyloidosis Cardiac. I was diagnosed of AL Amyloidosis in July 2022 and started Dara+ VCD* ( July 2022 till May 2023) with not getting normal with the free light chains especially Lambda and the treatment regimen got changed to Dara+ VPD ( June 2023 till November 2023 ) with no changes in Lambda and owing to worsen heart health the treatment regimen again changed to Melphalan + Dexamethasone ( December 2023 till February) 2024 with bimonthly maintenance doses of Dara. My heart health has deteriorated with LVOT gradient 37 & 60 Valsava . I have no idea as the cardiac medicines with Chemo + have started affecting my kidney with 1.05 Creatinine and 47 eGFR. I am in a real soup as Haematologists and Cardiologists are not able to follow any coherent approach on deciding the treatment regimen. My heart health and haematologic health are not in sync. I am in New Delhi, India. Even Dr. Saji Kumar of Mayo, Dr. Vaishali of BU or Dr. Vechalekar of UCL ,UK are not able to provide any definite guidance. I am sad to experience the casual approach of Doctors across the borders in appreciating the severity of the disease and be humane towards providing support and proactive guidance .
chandra@2023
Prof.( Dr) Satish Chandra
Facilitator of Amyloidosis Support Group of India ( ASGI) ,New Delhi India 🇮🇳

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