Building your ATTR-CM care team
Fact-checked by Living with transthyretin amyloid cardiomyopathy (ATTR-CM) can feel overwhelming, especially at the start. Symptoms may change over time, appointments can add up, and it is not always clear who to call with which concern.
Building an ATTR-CM healthcare team can offer greater clarity and coordination in your care. With the right mix of specialists and support, you don’t have to navigate this condition on your own.
Why a multidisciplinary care team matters for ATTR-CM
ATTR-CM is a complex heart condition that causes symptoms such as fatigue, shortness of breath, swelling in your feet and legs, and difficulty exercising, which can impact many aspects of your daily life.
But symptoms may also affect different organ systems, so care often works best when providers from different specialties communicate and collaborate.
A multidisciplinary care team helps ensure that symptoms are evaluated from multiple angles and that treatment decisions consider your overall health rather than a single organ system.
Coordinated care can also reduce treatment delays, prevent duplicate testing, and help your providers stay aligned on goals that matter to you, such as maintaining independence, slowing disease progression, and managing fatigue.
Just as important, a team-based approach can make it easier for you to ask questions and understand next steps. When everyone is on the same page, you can spend less energy navigating the system and more energy focusing on your well-being and planning for your future.
Key members of your ATTR-CM care team
While every person’s care team will look a little different, many people with ATTR-CM work with a core group of providers. Over time, this team may grow or change as your needs evolve.
Primary care physician
Your primary care physician often serves as the central hub of your care team. These healthcare providers can help manage day-to-day health concerns, coordinate referrals, and keep track of how ATTR-CM fits into your broader medical picture.
These clinicians may also monitor other conditions, review medications for potential interactions, and help connect the dots between symptoms that may not seem heart-related at first. Keeping your primary care physician informed of changes in symptoms or treatment plans can help ensure smoother communication across your team.
Cardiologist
A cardiologist plays a key role in diagnosing and managing ATTR-CM. This specialist monitors heart structure and function, evaluates symptoms such as shortness of breath and swelling, and guides treatment decisions.
Some people may see a cardiologist with specific experience in cardiomyopathies (diseases of the heart muscle) or amyloidosis (diseases in which clumps called amyloid deposits accumulate in tissues).
Regular follow-ups with your cardiologist help monitor how the disease is progressing and whether you need to adjust your treatments. This provider can also explain test results and help you understand what they mean for your daily life.
Genetic counselor
Because some forms of ATTR-CM can be inherited, a genetic counselor may be part of your care team. This specialist helps explain genetic testing results in clear, practical terms and discusses what those results may mean for you and your family.
A genetic counselor can also guide conversations with relatives who may be considering testing, as well as help you weigh emotional, medical, and logistical factors. The counselor’s role is not to tell you what to do, but to support informed decision-making at your pace.
Additional care providers
Depending on your symptoms and goals, you may also work with other professionals who support quality of life and function, including:
- Neurologists: This specialist evaluates and manages nerve-related symptoms, such as numbness, tingling, and issues with involuntary bodily functions, which can occur in some people with ATTR-CM.
- Hematologists: The primary role of this provider is to help interpret blood tests to rule out other forms of amyloidosis or coordinate care if your diagnosis or symptoms overlap with blood-related conditions.
- Ophthalmologists: This provider monitors and treats eye-related changes, such as vision issues or eye involvement that may occur with certain types of amyloidosis.
- Gastroenterologists and urologists: These specialists monitor and manage gastrointestinal and urinary problems that sometimes occur in ATTR-CM, and recommend treatments to improve nutrient intake.
- Physical therapists: These providers help maintain strength, improve exercise tolerance, and enhance quality of life.
- Occupational therapists: The role of this provider is to help you adapt daily activities and conserve energy.
- Mental health professionals: These specialists support emotional well-being, aid in stress management, and help you cope with your illness.
- Nurses or care coordinators: These clinicians help with education, scheduling, and communication between providers.
Each of these providers helps to complement your medical care by focusing on how ATTR-CM affects your everyday routines, relationships, and sense of control.
How family members can support your care team
ATTR-CM can affect day-to-day life in ways that extend beyond medical appointments. Some people find it helpful to involve family members or trusted loved ones as part of their support system. When this support reflects your preferences, it can ease stress while keeping you at the center of care decisions.
Family members may help with organization, such as tracking appointments, medications, or symptom changes, to share with your care team. Having another person accompany you to some appointments can also help when information feels overwhelming.
Support may also include assistance with daily tasks when you are fatigued or have limited stamina. Leaning on family members for emotional support, such as listening and checking in, can be just as valuable. It’s important to establish clear, respectful communication about boundaries and expectations so that family involvement feels supportive and well-balanced.
Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
