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Questions to Ask

If you have cardiac amyloidosis, here are some questions to consider talking about with your care team at your next health visit:

  • What type of amyloidosis do I have? What does it mean for me/my life?
  • How will we know if my treatment is working?
  • How advanced is my cardiac amyloidosis?
  • Is there a clinical trial that I can enroll in?
  • Is my condition genetic (known as mutant ATTR)? If so, which of my family members should be screened for the mutation?
  • I heard that some heart medicines can be more potent in people with amyloidosis. Do I need to adjust any of my heart medicines?
  • How is cardiac amyloidosis mainly affecting my heart?
  • Will I need a device to monitor and correct my heart rhythm?
  • Do I need to take a blood thinner?
  • How much salt (sodium) is OK for me to eat? Are there any other changes I should make?
  • Are there specific biomarkers or blood tests that can show amyloidosis or the damage done?
  • Are there any support groups so I can talk with other people and families affected by the disease?
  • Could I benefit from seeing an expert in cardiac amyloidosis? Is there one you recommend? 
  • Last Edited 01/23/2023