ATTR-CM can be a life-changing diagnosis, and if you’re an older adult, it can have an especially large impact on your quality of life. Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare but serious heart disease that occurs when faulty blood proteins called transthyretin (TTR) accumulate in the heart, causing the muscle to thicken and stiffen.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d61ff95e-0bff-4b33-a09a-580fc067112a There are two variants of ATTR-CM: hereditary and wild-type . Both are most commonly diagnosed in people over the age of 50.e60dc2a1-f33c-4a05-9b50-8e3e8e597629af8b74d5-9316-4525-9bec-fe47c5e48b80 Given the complexity of ATTR-CM, particularly in older adults, managing the condition often requires a multidisciplinary team of geriatric medicine providers. This team may include your primary care provider, as well as specialists such as a cardiologist, neurologist, physical therapist, orthopedic surgeon, and palliative care provider.e60dc2a1-f33c-4a05-9b50-8e3e8e59762979da918c-429a-4ec2-ad1d-c13c29d2483e
Old Age and ATTR-CM: Overlapping Symptoms Old Age and ATTR-CM When TTR accumulates in the heart, it affects other organs and body functions, causing symptoms that are often mistaken as normal signs of aging. This makes ATTR-CM particularly difficult to recognize and diagnose.e60dc2a1-f33c-4a05-9b50-8e3e8e5976291dc3de7c-4f4b-4aef-87eb-347e3bafa4b4 According to Ajay Vallakati, MBBS , a board-certified internal medicine physician specializing in advanced heart failure at The Ohio State University Wexner Medical Center in Columbus, Ohio, common symptoms of ATTR-CM that mimic typical signs of aging include: Unexplained fatigue Lightheadedness or dizziness when standing up ( orthostatic hypotension ) Shortness of breath, particularly during exercise Leg swelling ( edema ) Seek medical attention if these symptoms appear, worsen, or limit your daily activities. Also watch for shortness of breath during sleep or while at rest, swelling in the abdomen, heart palpitations or irregular heartbeat , or fainting episodes, says Dr. Vallakati. These symptoms could be signs that your treatment needs to be reevaluated by your care team.
Manage Frailty and Loss of Mobility Frailty and Mobility Frailty, a state of increased vulnerability to adverse health outcomes, affects up to 17 percent of older adults.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fcae4326-599a-438d-a467-43b1d0f04320 ATTR-CM makes frailty, along with related issues such as loss of mobility and balance, even more concerning. One study of 880 older adults with ATTR-CM found that 57 percent of participants were frail, which increased their risk of dying regardless of other health factors.e60dc2a1-f33c-4a05-9b50-8e3e8e5976294b5d6601-1faf-4e35-b648-98c2390d013d ATTR-CM worsens frailty and loss of mobility and balance by causing heart muscle stiffness that reduces the heart’s ability to pump blood efficiently. It limits how much oxygen and nutrients reach muscle tissue during activity, causing those affected to feel fatigued and short of breath sooner.e60dc2a1-f33c-4a05-9b50-8e3e8e5976293fa8b958-0171-470f-81ac-3d90bf5a45cf As such, ATTR-CM may make you feel less inclined to exercise , leading to muscle weakness and poor fitness over time. This deterioration can negatively affect balance and mobility, making daily tasks more challenging and increasing your risk of falls.e60dc2a1-f33c-4a05-9b50-8e3e8e5976290cbecb37-4fb3-4fb1-9fc7-c929af1829f8 Fortunately, these challenges can often be managed with a supervised exercise program, such as those offered through cardiac rehabilitation centers or with physical therapy offered at home, says Vallakati. A combination of resistance training and aerobic exercise strengthens the muscles you rely on to perform daily tasks and trains your heart to pump more efficiently, helping improve your functional abilities. However, symptoms such as fatigue, shortness of breath, and an increased risk of falling can make exercise challenging. Low-impact activities such as walking, swimming, and cycling may be more manageable, along with light gardening, cooking, and household tasks. It’s also helpful to complete shorter exercise sessions more frequently rather than attempting long workouts that may lead to fatigue.e60dc2a1-f33c-4a05-9b50-8e3e8e59762972d47459-7a63-4f66-a39e-57b212115e79 Consult your healthcare team members before starting an exercise program with ATTR-CM. They can conduct a frailty assessment to determine whether exercise is appropriate, and, if so, which program will be safest and most effective for you. People who are too frail to exercise may instead require palliative care and symptom control.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fcae4326-599a-438d-a467-43b1d0f04320 Beyond exercise, assistive devices can also play an important role. “Assistive devices can be very helpful for people with ATTR-CM by reducing physical strain and improving safety,” says Vallakati. Mobility aids such as canes and walkers can be helpful for standing up, sitting down, and walking. Other tools, such as grab bars, shower chairs, raised toilet seats, and adjustable recliners, can make daily routines easier and more comfortable, he adds.
Eat Well for Health and Vigor Diet “[Older] patients with ATTR-CM are at higher risk for weight loss and malnutrition, so eating well is especially important,” says Vallakati. He recommends focusing on lean proteins, healthy fats, whole grains, and colorful vegetables to ensure a balanced diet rich in essential nutrients for overall health. Carefully balancing sodium and fluid intake is also particularly important for slowing the progression of heart failure symptoms.e60dc2a1-f33c-4a05-9b50-8e3e8e59762901d1d97a-23cf-4060-bbff-c107c90e71f0 Many older adults also benefit from vitamin D and calcium supplementation, as bone loss ( osteopenia ) is common in older adults regardless of ATTR-CM, says Vallakati. Discuss supplements with your healthcare provider before adding them to your wellness regimen. Eating smaller, more frequent meals is recommended as well. During digestion, blood flow is redirected to the stomach and intestines. In older adults and people with heart conditions, the heart may not compensate adequately for this shift, which can cause discomfort and lightheadedness after larger meals.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fa0d655b-f0e0-4162-b1c6-6e5efac10dcb Additionally, consider using meal delivery services when you’re feeling fatigued and preparing meals in batches when you have more energy.
Reevaluate Your Medication Use Medication Regular use of multiple prescription drugs (polypharmacy) is common in older adults.e60dc2a1-f33c-4a05-9b50-8e3e8e597629cf52415d-0623-4c4f-a21a-2cbf38dfa84a Moreover, many medications used by this population can worsen ATTR-CM symptoms by lowering blood pressure too much or affecting how the heart pumps blood. According to Vallakati, medications that may need to be avoided or adjusted include: Alpha-blockers Angiotensin-converting enzyme inhibitors Angiotensin II receptor blockers Beta-blockers Calcium channel blockers Diuretics Nonsteroidal anti-inflammatory drugs These medications are commonly used to treat conditions like high blood pressure, heart failure, prostate enlargement , and arthritis . Bring a list of all your current medications, including over-the-counter drugs and supplements, to each medical appointment. Ask your doctor whether any of the medicines on your list may be contributing to symptoms such as fatigue, dizziness, or shortness of breath. “If a medication is deemed essential, patients should discuss potential alternatives with their doctors,” says Vallakati. Don’t stop taking prescribed medications without consulting your doctor first.
Prioritize Quality of Life and Mental Health Quality of Life Symptoms of ATTR-CM, including fatigue, shortness of breath, and dizziness, can limit mobility and independence, often leading to social isolation and depression among older adults.e60dc2a1-f33c-4a05-9b50-8e3e8e597629a3776839-a546-4370-8f9e-6cd4978ba287 Protect your quality of life by staying connected with family, friends, and neighbors through phone calls, video chats, letters, or social media. If you’re able, participate in local classes, volunteer activities, or social events. And ask a caregiver to join you, especially if you need someone by your side in case you get tired or dizzy.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d08d0cac-66ca-4b57-b896-7681556254d9 Joining an online or in-person ATTR-CM support group is another great way to connect with others, which may help you feel less alone. It provides a safe space where you can share fears and worries with people who are experiencing these emotions as well.e60dc2a1-f33c-4a05-9b50-8e3e8e597629386781aa-c037-4292-a0d6-54a92467a175 If you’re struggling with depression, seek help from a mental health professional. They can help you process your emotions and develop healthy coping strategies.e60dc2a1-f33c-4a05-9b50-8e3e8e597629386781aa-c037-4292-a0d6-54a92467a175
Consider Goals of Care Goals of Care Life expectancy with ATTR-CM varies depending on the type, the person’s age at the time of diagnosis, the presence of other health conditions, and access to treatment. Without treatment , people with ATTR-CM live an average of five to seven years following diagnosis.e60dc2a1-f33c-4a05-9b50-8e3e8e597629200b6133-3f3c-47b8-a9d2-b9db134be329 Fortunately, new medications can significantly improve outcomes by managing symptoms more effectively, reducing hospitalizations, and extending one’s lifespan, says Yu-Ming Ni, MD , a board-certified cardiologist and lipidologist at MemorialCare Orange Coast Medical Center in Fountain Valley, California. These treatments include TTR silencers, which reduce the body’s production of the abnormal protein, and TTR stabilizers, which prevent the TTR protein from changing shape.e60dc2a1-f33c-4a05-9b50-8e3e8e5976293efe8d9e-2380-44be-97c7-e5f1b41ebb5c “Both can be appropriate for older patients in the right setting,” says Dr. Ni. Talk to your doctor about whether these treatments may be right for you. Despite these advances, it’s important for older adults with ATTR-CM to have a “goals of care” conversation with their family members and healthcare team. “ATTR-CM carries a worse prognosis than usual heart failure,” says Ni. “Therefore, it’s important to establish expectations for how you’d like to lead your life.” Some people may prefer to prioritize symptom relief, whereas others may want to focus on prolonging life. Discuss your preferences with your loved ones and healthcare team now in case you’re unable to make decisions for yourself later. “This is where completing an advanced directive and dedicating someone to be your alternate medical decision-maker, or durable power of attorney, is very important,” says Ni.
What Caregivers Need to Know Caregiver Support Many older adults with ATTR-CM will need caregiver help , especially those with more severe symptoms.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c1346650-1de8-4695-acd0-d9b85dfab2f6 Caregivers can support their loved ones in several important ways. They can help them manage medications and keep track of appointments, encourage discussions with cardiologists about newer medication options that may slow disease progression, and handle daily tasks such as picking up prescriptions, grocery shopping, and preparing meals. Caregivers can also provide emotional support by accompanying their loved one to appointments, helping them stay connected with friends, and listening to their concerns.
The Takeaway Transthyretin amyloidosis cardiomyopathy is a rare but serious heart disease in older adults, with symptoms that often overlap with normal signs of aging. ATTR-CM management requires a multidisciplinary team of providers, and it involves proactively addressing frailty and loss of mobility and balance, often through supervised exercise such as cardiac rehabilitation and the use of assistive devices. Older adults with ATTR-CM should maintain a nutritious diet and carefully balance their sodium and fluid intake, while also consulting their healthcare team when medications they’re taking may be worsening symptoms like dizziness and fatigue. Given the disease’s prognosis, which can be improved by newer treatments like TTR silencers and stabilizers, it’s vital for older adults with ATTR-CM to prioritize their quality of life and mental health, as well as to establish “goals of care” and complete advanced directives with their loved ones and healthcare team.
Resources We Trust Cleveland Clinic: Living With ATTR-CM: Your Questions Answered American Heart Association: Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Amyloidosis Foundation: Patient Resources Mayo Clinic: Cardiac Amyloidosis — What Is Amyloid and How Does It Affect the Heart? World Heart Federation: Living With Transthyretin Amyloid Cardiomyopathy
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