Your ATTR-CM Healthcare Team
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a disease that can lead to heart failure. ATTR-CM occurs when an abnormal protein called amyloid builds up in the heart. This protein buildup makes the heart muscle stiff. The stiff muscle makes it hard for the heart to pump blood. This leads to the signs and symptoms of heart failure.1
ATTR-CM is a systemic disease. This means it can affect other parts of the body, not just the heart. Because of this, your team may include many types of specialists, including:2
- Doctors
- Nurse practitioners
- Dietitians
- Physical therapists
- Mental health professionals
Treatment for ATTR-CM is directed toward treating the heart failure symptoms. It also aims to treat the underlying cause of the amyloid buildup. A team of medical and healthcare experts can combine efforts to offer the best care for people with ATTR-CM.1,2
Primary care provider (PCP)
Your primary care provider (PCP) helps manage your overall medical care. This may be an internist or a general practitioner (GP). They are often the one who first notices signs of heart failure. They work with your cardiologist on your treatment plan. Your PCP typically makes referrals to specialists based on your healthcare needs.3
Cardiologist and ATTR-CM specialist
A cardiologist is a doctor who has special training in treating diseases of the heart and blood vessels. Your main doctor will generally refer you to a cardiologist if you have symptoms of heart failure.2-4
ATTR-CM is a specific type of heart disease. You may see a cardiologist who is an amyloidosis specialist or an advanced heart failure specialist. This doctor has extra training in diagnosing and treating ATTR-CM.2
When you visit with this specialist, they will take a complete medical history. They will also conduct a physical exam. They will likely check your blood pressure and listen to your heart and lungs. They will ask about any symptoms you are experiencing. They will order tests to diagnose ATTR-CM and check your heart function. These tests often include blood tests, an electrocardiogram or echocardiogram, and special heart imaging scans.2
Neurologist
The abnormal protein that causes ATTR-CM can also affect the nerves. This is called polyneuropathy. This nerve damage can cause symptoms like numbness, tingling, or pain in the hands and feet. It can also cause digestive problems or dizziness. A neurologist is a doctor who treats nerve problems. They can check you for nerve damage and help manage these symptoms.2
Hematologist
A hematologist is a doctor who treats blood disorders. A hematologist may be part of your team to help with diagnosis. They can run tests to make sure you have ATTR-CM and not a different type of amyloidosis (like AL amyloidosis). They help confirm the exact type of protein causing the problem.2
Genetic counselor
ATTR-CM can be hereditary. This means it is caused by a genetic mutation passed down by a parent. ATTR-CM can also happen naturally with age. This is called wild-type ATTR-CM. A genetic counselor is a professional who can help you understand which type you may have. They can talk with you about genetic testing. Genetic testing can show if your ATTR-CM is hereditary. This information is important for you and your family members.1,2
Nurses
Nurses play an important role in the care of people with ATTR-CM. You may encounter a registered nurse (RN) or nurse practitioner (NP). Either of these may have specialized training in heart failure or amyloidosis.3
Nurses can help you understand and follow your individualized plan. This includes prescription drugs, diet, and exercise. They can perform tests, monitor and evaluate your symptoms, and make recommendations if things get worse.3
Physical and occupational therapy
Physical and occupational therapists can help you get back on your feet. This is helpful if you have been deconditioned, hospitalized, or inactive. They work with you to build back your strength. They teach you the proper, most energy-efficient ways to carry out the activities of your daily life. This may include things like how to get in and out of a chair, get dressed, or take a shower.3
Dietitians
Dietitians provide advice and counseling on what you should eat. People with heart failure symptoms often need to manage sodium and fluid intake. A dietitian can create a tailored meal plan. This plan takes into account what you like to eat and any food restrictions.3
Dietitians also educate you on how to read ingredient labels. They help you understand the importance of maintaining healthy food choices, reducing your sodium, and maintaining a healthy body weight.3
Mental health professionals
Psychologists and social workers can help people with ATTR-CM cope with their feelings, limitations, and changes in their daily lives. They know how to identify symptoms of stress, anxiety, or depression. Most offer treatment to help people and their families cope with a chronic illness. They also help people cope with changes they may experience as the condition advances.3
Pharmacist
Pharmacists are the experts in medications. They evaluate drug interactions and the risk of developing adverse events when new drugs are prescribed. They can help provide information to doctors as they select an appropriate drug regimen. They do this while taking into consideration all drugs, vitamins, and supplements you may already be taking. Pharmacists can also provide instructions on how to safely take your medicines.3
The team as a whole
Open communication can help you understand new information. It also guides your decision-making process. Your healthcare team can help you manage your ATTR-CM and maintain the best possible quality of life.
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