Peace of Mind Starts With Expert Amyloidosis Care
You deserve the clearest picture of your heart health. Some heart conditions, such as cardiac and systemic amyloidosis, can often be misdiagnosed. That’s why you need a team who considers all possibilities. That’s just the start of our amyloidosis care. We’ll provide a clear diagnosis and compassionate care.
Conditions That May Be Caused by Amyloidosis
- Amyloidosis systemic effects
- Arrhythmias (heart rhythm issues)
- Heart failure
Treating Cardiac and Systemic Amyloidosis
Your peace of mind starts with expert heart care. Our cardiologists are dedicated to using advanced treatments and technologies to heal your heart, so you can return to what matters most to you.
- Diagnosing and Treating Cardiomyopathy and Cardiac Amyloidosis
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Amyloidosis was once considered rare. Now, experts realize it is more common than we thought. The disease can be misdiagnosed as another illness, like hypertrophiccardiomyopathy (HCM) or hypertensive heart disease.
Diagnostic tests to check for cardiac amyloidosis may include:
- An echocardiogram
- An electrocardiogram (ECG)
- Cardiac magnetic resonance imaging (MRI)
- Endomyocardial biopsy, in some patients
- Genetic testing
Diagnostic tests to check for systemic amyloidosis may include:
- Blood testing
- Bone marrow biopsy, in some patients
- Skeletal imaging
Treatment Options
Potential treatments could include:
- Lifestyle changes, including stopping alcohol use and monitoring salt intake
- Medications, both adding and removing medications
- Medications or therapies, provided by our hematology teams, related to blood cancer treatments in patients with systemic amyloidosis
Now, FDA-approved medications can treat amyloidosis. Receiving the correct diagnosis is important, as it can improve your chances of recovery. Count on our experts for answers and an accurate diagnosis.
- Surgical Treatment Options
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Your care team will discuss with you whether any of these options could work for you:
- A bone marrow transplant may be necessary for people who have systemic, amyloid light-chain (AL) amyloidosis.
- A heart transplant may be considered for people with some types of amyloidosis who have very poor heart function.
- A liver transplant may be necessary for people who have hereditary amyloidosis.
Heart Experts You Can Count On
Your whole health is our whole focus. The best way to support you in body, mind and spirit is to work together across our areas of expertise and take a highly coordinated approach.
Together, we’ll provide the effective treatment you need, keeping your whole health in mind at every step.
Find Support From People Who Understand
As you navigate your cardiac and systemic amyloidosis diagnosis and treatment, take comfort knowing you're not the only one walking this path. In our AdventHealth Cardiovascular Institute support groups and programs, you can give and receive support and encouragement alongside people who understand your journey.
Answering Your Cardiac and Systemic Amyloidosis Questions
The more you know about your heart health, the more empowered you’ll be as you and your family journey toward wholeness. We’re here to answer these frequently asked questions about cardiac and systemic amyloidosis, and your care team will be happy to answer any questions you have throughout your treatment.
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Q:Question: What is amyloidosis, and what’s the difference between cardiac amyloidosis, AL amyloidosis and ATTR amyloidosis?
A:Answer:Amyloidosis is a rare condition. In this illness, an abnormal protein called amyloid builds up in organ tissues and may cause them to malfunction. Cardiac amyloidosis means these proteins build up in the heart muscle. Many proteins can cause amyloidosis. However, two cause most cardiac cases: amyloid light-chain (AL) amyloidosis and transthyretin (ATTR) amyloidosis.
Continue ReadingCollapse AnswerAL amyloidosis occurs when abnormal plasma cells in the bone marrow produce misshapen light chains. These proteins accumulate over time, often in the heart, and may lead to heart failure. ATTR amyloidosis is when transthyretin proteins build up in the body’s tissues, often the heart. There are two ATTR subtypes: wild-type ATTR (wATTR) and hereditary ATTR (hATTR). Wild-type is the most common and is linked to aging. Hereditary ATTR is caused by a genetic mutation in the TTR gene.
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Q:Question: What symptoms should make me worry about cardiac or systemic amyloidosis?
A:Answer:When it comes to systemic or cardiac amyloidosis, several symptoms should be considered. These include:
- Dizziness
- Enlarged tongue (macroglossia)
- Extreme fatigue
- Foamy urine
- Heart palpitations
- Nerve issues (numbness, tingling or burning in the hands or feet)
- Recurrent carpal tunnel syndrome, spinal stenosis or trigger finger
- Shortness of breath
- Skin changes, like easy bruising or dark patches around the eyes
- Swelling in your stomach or legs
- Unexplained constipation or diarrhea
If you or a loved one experiences any of these symptoms, visit your cardiologist for the next steps.
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Q:Question: How is amyloidosis diagnosed, and will I need a biopsy, blood tests, or a heart scan?
A:Answer:Diagnosing amyloidosis involves biopsies of the affected organ, urine tests, blood tests, diagnostic imaging tests, like an MRI, echocardiogram or nuclear imaging, as well as genetic testing. All of these tests are involved to help you get a clear picture of your health and an accurate diagnosis. Amyloidosis is often overlooked because its symptoms overlap with those of more common diseases, but early detection is key to getting the care you deserve.
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Q:Question: What is the prognosis, and how serious is cardiac involvement?
A:Answer:Amyloidosis is progressive and gets worse over time. New diagnostic tests now make early diagnosis easier. Advanced treatment technologies can help our providers treat your symptoms. Early care may slow the disease, improve your quality of life, and extend your life expectancy. Cardiac problems are the most serious issues with amyloidosis. Amyloidosis can stiffen the heart and lead to heart failure and arrhythmias.
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Q:Question: What treatments are available, and can treatment slow the disease or improve survival?
A:Answer:While there isn’t a cure for amyloidosis, an early diagnosis paired with effective treatments can help you manage your symptoms, slow the progression of the disease and improve your quality of life and life expectancy. Treatment for amyloidosis includes:
- Adding or removing medications
- Blood stem cell transplants
- Chemotherapy
- Lifestyle changes
- Organ transplants
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Q:Question: What are the risk factors and effects of amyloidosis?
A:Answer:Having amyloidosis puts you at a greater risk of developing heart failure, arrhythmias or other heart rhythm issues and systemic effects of amyloidosis.
- Heart Failure
- If amyloid proteins accumulate in the heart muscle, they thicken the heart wall and enlarge it. As that happens, the heart works harder to pump enough blood through the body. This extra strain on the heart can lead to heart failure.
Continue ReadingCollapse Answer- Arrhythmias (Heart Rhythm Issue)
- Amyloidosis can cause irregular heart rhythms, called arrhythmias, or weaken the heart’s electrical current. A type of arrhythmia that’s common with amyloidosis is atrial fibrillation (AFib).
- Amyloidosis Systemic Effects
- Amyloid proteins are waxy, stick together easily and can form into large clusters. If those clusters get stuck, they can cause a partial blockage in a heart valve and limit blood flow. These clusters can also cause nerve damage and symptoms such as neuropathies. They may even affect other parts of the nervous system, such as balance or the ability to modulate daily functions such as urination or bowel movements. Protein deposits within the bloodstream can also cause anemia or damage to other organs, including the kidneys or bones.
- Heart Failure
Find Cardiac and Systemic Amyloidosis Care Near You
Because amyloidosis can be mistaken for other heart conditions like HCM, you deserve a team of experts that will give you an accurate diagnosis and a clear path to the right treatment. Within the AdventHealth Cardiovascular Institute network, our specialists will take the time to listen to your concerns, run a variety of diagnostic tests to identify amyloidosis and exhaust noninvasive treatments like medications and lifestyle changes before recommending surgery. Explore our locations or let our team guide you to the one that’s right for you, so you’re in the best place to get the care you need.