So Sorry you are going through this. Your will make many friends on this site all experiencing different things on different days. What medications have you been put on?
June 29
Walking into a first cardiology appointment with a Stage 3 cardiac amyloidosis diagnosis and still having so many unknowns is a lot to carry — but asking the right questions is a great first step. Here is a solid list to bring with you.
Understanding Your Diagnosis
- What type of cardiac amyloidosis do I have — AL or ATTR Show Full Answer
Walking into a first cardiology appointment with a Stage 3 cardiac amyloidosis diagnosis and still having so many unknowns is a lot to carry — but asking the right questions is a great first step. Here is a solid list to bring with you.
Understanding Your Diagnosis
- What type of cardiac amyloidosis do I have — AL or ATTR?
- If ATTR, is it hereditary (hATTR) or wild-type?
- What does Stage 3 mean for my specific situation?
- Which organs are affected beyond my heart?
Testing
- What tests have already been done, and what do the results mean?
- Do I need additional tests such as an echocardiogram, cardiac MRI, or biopsy?
- Should I have genetic testing, and does this affect my family?
Treatment
- What treatment options are available for my type and stage?
- What are the goals of treatment — slowing progression, managing symptoms, or both?
- Are there clinical trials available to me in Canada?
My Care Team
- Who else should be part of my care team (hematologist, nephrologist, etc.)?
- Who is my main point of contact if symptoms change?
Day-to-Day Management
- Are there medications I should avoid?
- What symptoms should prompt me to seek urgent care?
- What lifestyle adjustments would support my heart health?
Don't hesitate to bring a trusted person with you to help take notes — there's a lot to absorb in one visit!
June 26
Join
Your Privacy Choices
