I Have Cardiac Amyloidosis

Written by a U.S. board-certified cardiologist, for patients and families who just heard the word “amyloidosis” for the first time.

A cardiac amyloidosis diagnosis raises more questions than any single doctor’s appointment can answer. What actually is this disease? Is it the AL kind or the ATTR kind — and does that difference matter? Why does everyone keep asking about carpal tunnel surgery? Which of the new drugs is right for you, and what will it actually cost? What can you still do — travel, exercise, work — and what should you watch for?

This guide answers all of it, in plain language, without talking down to you.

Inside, you’ll find:

• A clear explanation of what cardiac amyloidosis is, how AL and ATTR differ, and why this disease — once considered vanishingly rare — is now recognized in a meaningful share of older adults with unexplained heart failure

• The full diagnostic pathway explained step by step: blood and urine tests, the PYP scan, genetic testing, and what your specific results actually mean

• An in-depth look at every FDA-approved treatment — tafamidis, acoramidis, vutrisiran, and more — including how stabilizers and silencers work differently, and how to think through the choice with your cardiologist

• A realistic, current picture of the research pipeline: gene editing, new PET tracers, and amyloid-clearing antibodies, explained with both the promise and the real safety history

• Straight talk about drug costs, Medicare coverage, and the assistance programs that bring six-figure list prices down to what most patients actually pay

• A full chapter on medications to avoid or use with caution — because several drugs that are completely standard in other heart conditions are not safe here

• A dedicated emergency chapter: exactly when to call your doctor versus go straight to the ER

• Practical, day-to-day guidance most patient guides skip — diet, exercise, travel, sleep, intimacy, orthostatic hypotension, caregiver burnout, and advance care planning

• Recurring patient stories that show how these concepts play out in real life

• A complete glossary, doctor-visit worksheets, a daily symptom tracker, and QR codes linking directly to major patient organizations