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Cardiac Amyloidosis

Cardiac amyloidosis is a rare and serious disease that requires an accurate diagnosis and prompt treatment. At the UK Gill Heart & Vascular Institute, we offer treatments that aren’t widely available. Our team approach and level of experience gives you the best chance to control the disease and extend your life.

  • Why choose UK HealthCare?

    We offer services and treatments other hospitals can’t provide. Highlights of our program include:

    • One-of-a-kind care: Cardiac amyloidosis is considered so rare that very few hospitals in the country have the capability to treat it. Ours is the only cardiac amyloidosis clinic in Kentucky. Here, you’ll have the resources you need all under one roof.
    • Comprehensive treatment: Your team includes doctors who specialize in treating cardiac amyloidosis as well as kidney, liver and other organ problems that can come with it. You’ll also have a nurse coordinator to support and guide you throughout your care.  
    • Leading-edge research: Our physicians are also researchers looking for new ways to treat this disease. We offer clinical trials that test new therapies and study how the disease progresses. 
    • Amyloidosis alliance: The cardiac amyloidosis clinic affiliates with multiple other specialties within UK to provide comprehensive amyloidosis management to our patients. Specialties include hematology, nephrology, pulmonology and neurology so that patients with amyloidosis can expect care to treat the full spectrum of symptoms.
  • What is Cardiac Amyloidosis?

    Cardiac amyloidosis occurs when an abnormal protein — called amyloid — builds up in your heart tissue. This buildup makes it hard for your heart to work the way it should. The heart muscles get rigid, which prevents the muscles from relaxing between beats and stops blood from getting into your heart. Many people with the condition also have issues with their kidneys, liver and other organs. 

    There are two main types of cardiac amyloidosis:

    • Transthyretin amyloidosis (ATTR amyloidosis): This type results from mutated deposits of transthyretin, a protein made by the liver. The two subtypes of ATTR are:
      • Wild-type amyloidosis: Usually affects people in their 60s or older
      • Hereditary amyloidosis: Runs in families and typically affects people in their 40s or older
    • Light chain amyloidosis (AL amyloidosis): This type of amyloidosis is associated with blood cancers like multiple myeloma. It is not a type of cancer, but it is treated with chemotherapy.
  • Symptoms of Cardiac Amyloidosis

    Many people with cardiac amyloidosis have heart failure symptoms. You should be screened for cardiac amyloidosis if you:

    • Have symptoms of heart failure and one or more of these symptoms: 
      • Shortness of breath
      • Unexplained weight loss or poor appetite
      • Peripheral neuropathy in the feet
      • Atrial fibrillation (Afib)
      • An echocardiogram that shows the heart is squeezing properly but doesn’t relax completely (diastolic heart failure)
      • Frequent hospital admissions for heart failure

    Or

    • Are over 60 years old and have heart failure and a thick heart as shown on an echocardiogram
  • Diagnosing Cardiac Amyloidosis

    We diagnose cardiac amyloidosis using a technetium pyrophosphate scan (cardiac PYP scan). This test is accurate 95 percent of the time. It helps us determine which type of cardiac amyloidosis you have. During the test: 

    • We inject a small amount of harmless radioactive dye into a vein in your arm. 
    • This dye sticks to areas of amyloidosis and causes them to “light up.”
    • We then perform a scan similar to a CT scan, which allows us to see the areas that are lit up. 

    We also offer genetic testing to you and your family members if you have the hereditary form of cardiac amyloidosis. You and your family members can get screened in our clinic, or we can mail a screening kit to their homes. 

  • Cardiac Amyloidosis Treatment

    There’s no cure for cardiac amyloidosis, but treatment can help you manage symptoms. While cardiac amyloidosis symptoms are similar to heart failure, the disease should not be treated like heart failure. People who get proper treatment may live for 10 years or more with the condition. Cardiac amyloidosis treatments include:

    • Medications:
      • Tafamidis: This oral medication has few side effects and slows the progression of the disease.
      • Patisiran: This intravenous therapy is given once a month in an infusion center. It prevents amyloid formation and improves neuropathy symptoms. Research is ongoing for heart-related symptoms.
      • Inotersen: This injection is for people with hereditary amyloidosis. It prevents amyloid from forming and can improve neuropathy symptoms. 
      • Doxycycline: This antibiotic can stop amyloid deposits and reduce the number of deposits. 
    • Green tea: Studies have shown that drinking green tea can stop the buildup of amyloid proteins.
    • Chemotherapy: This treatment is used only for light chain amyloidosis.
    • Heart transplant: A heart transplant may be an option for those with only heart-related symptoms. 

    We’ll monitor you regularly with blood tests and echocardiograms to check for side effects and see if you’re responding well to treatment. You can also get lab work in your community if travel is a concern.