Transthyretin amyloid cardiomyopathy (ATTR-CM) is a serious and debilitating heart condition that may require a collaborative team of experts. ATTR-CM not only affects the heart, it also often impacts multiple other areas of your body. Having a coordinated ATTR-CM care team to help address and manage your various symptoms is vital for slowing disease progression and guarding your quality of life.
“I identify whether patients have noncardiac symptoms of the disease and refer them to the specialists they need,” says James Youssef, MD, an advanced heart failure and transplant cardiologist at Mount Sinai Fuster Heart Hospital in New York City. Depending on your symptoms, your cardiologist may refer you to a neurologist, organ care specialist, orthopedist, or another healthcare provider.
1. Cardiologist
Since ATTR-CM is a heart disease, a cardiologist should play the central role in your care team. Cardiologists often provide a diagnosis or confirm an initial diagnosis, prescribe treatments to slow disease progression, and manage heart-related symptoms, such as shortness of breath, fatigue, and swelling, says Purvi Parwani, MD, cardiologist, professor of medicine, and director of the echocardiography laboratory at Loma Linda University Health in Loma Linda, California.
“Typically, patients with ATTR-CM see their cardiologist every three to six months, or more frequently if their symptoms are worsening or treatment is being modified,” says Dr. Parwani.
2. Primary Care Physician
While a cardiologist often serves as the main coordinator of your ATTR-CM care team, your primary care physician will remain closely involved in your overall health. Your primary care physician helps manage other health conditions you may have and ensures effective communication among the specialists you work with, says Parwani. They also help coordinate routine screenings, provide vaccinations, and address new symptoms that arise.
3. Neurologist
Your cardiologist may refer you to a neurologist for nerve-related symptoms. The amyloid deposits associated with ATTR-CM can damage nerves in the arms, legs, hands, and feet, a condition known as peripheral neuropathy. Dr. Youssef says people with peripheral neuropathy may experience symptoms like:
- Burning
- Limited mobility
- Numbness
- Tingling
These symptoms tend to go underreported, with patients overlooking them or attributing them to the aging process or other conditions like diabetes. “Having a neurologist onboard to do formal testing for nerve involvement is very important,” says Youssef. Your neurologist can identify these symptoms and prescribe medications to relieve them.
4. Organ Care Specialist
Amyloid deposits can build up in organs other than the heart, including the kidneys, liver, and gastrointestinal (GI) tract. This buildup can lead to chronic diarrhea, constipation, nausea, protein in the urine, and reduced kidney function.
“As symptoms arise and issues involve other organ systems, we refer as needed,” says Youssef. Your cardiologist may refer you to a gastroenterologist or nephrologist (kidney specialist) to determine whether your symptoms are related to ATTR-CM or other treatable conditions. The specialist can also prescribe appropriate treatments to help manage your symptoms.
5. Physical or Occupational Therapist
A physical or occupational therapist can play a key role in helping you maintain your independence, says Parwani.
“Physical therapy can help improve strength, balance, and walking ability, while occupational therapy can help patients adapt to routine activities,” says Parwani.
6. Orthopedist
“Orthopedic surgeons are helpful when conservative treatments don’t work for these issues and surgical or procedural interventions are needed,” says Parwani.
Your orthopedist will also monitor you for symptom recurrence because ATTR-CM patients have higher rates of symptoms returning after surgery.
7. Genetic Counselor
If you have hereditary ATTR-CM, your cardiologist may recommend speaking with a genetic counselor. “They take an extensive family history to identify any potential relatives that may benefit from screening for ATTR-CM,” says Youssef.
At-risk family members can receive genetic testing to determine whether they carry the gene responsible for the disease. Those who test positive can then be monitored closely for early symptoms.
“The earlier you diagnose it, the better the patient does because you can get them on therapy before symptoms really progress,” says Youssef.
8. Social Worker
Social workers can help guide you through the many logistical and financial hurdles that can come with an ATTR-CM diagnosis. For example, they can help you navigate insurance coverage for medications, screenings, and testing and guide you through applying for financial assistance to help cover costs.
Social workers can also connect you with community resources to help with transportation to medical appointments, home health services, and mental health support, says Parwani.
Most hospitals and amyloidosis care centers have social workers on staff or available by referral. Youssef recommends talking to a member of your care team if you’re interested in the services a social worker can provide.
9. Your Friends and Family
ATTR-CM may cause intense fatigue and a decline in mobility that leads to loss of independence. In such cases, it’s important to lean on friends and family members for help with daily responsibilities and managing your disease.
“Spouses, children, or even extended relatives can help look out for patients and make sure their care team is informed of any change in symptoms so we stay on top of things,” says Youssef. Loved ones can also remind you to take medications and bring you to appointments.
“We can do a lot for patients when we see them in the clinic and hospital, but once they’re home, it’s really important to have support from friends and family,” says Youssef.
The Takeaway
- Managing ATTR-CM requires a collaborative team of specialists because the disease often impacts multiple organ systems beyond the heart, including the nerves, kidneys, and musculoskeletal system.
- While a cardiologist leads the team by treating heart-related issues, and a primary care physician ensures overall health maintenance, other experts like neurologists, orthopedists, and organ specialists manage specific symptoms like peripheral neuropathy, carpal tunnel syndrome, and digestive problems.
- Genetic counselors help families identify hereditary risks, while social workers assist with the financial and logistical challenges of navigating insurance and chronic care.
- They’re not medical professionals, but friends and family members can provide critical assistance for both medical treatment and the challenges of daily life.
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