A correct diagnosis of transthyretin amyloid cardiomyopathy (ATTR-CM) can come after several years of unexplained symptoms and, at times, misdiagnosis. As a result, it is usually a relief finally to have a clearer idea of treatment options and how to manage your symptoms.
But there is a lot of information to process. As you seek to understand ATTR-CM and your prognosis, remember that a key aspect of managing your disease is to proactively preserve your quality of life.
What is ATTR-CM?
Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare progressive disease of the heart muscle that leads to congestive heart failure. It occurs when the transthyretin protein produced by the liver is unstable. Symptoms include fatigue; shortness of breath; irregular heart rate or palpitations; swelling of the legs, ankles and stomach; brain fog; wheezing; and dizziness. It often goes underdiagnosed because of a lack of awareness and knowledge of the disease. There is currently no cure for ATTR-CM.
Medication and a healthy approach to diet, exercise and lifestyle will all contribute to your overall well-being.
How does ATTR-CM affect quality of life?
ATTR-CM primarily affects the heart. As amyloid deposits build up in the heart, the heart chamber thickens and stiffens, making it harder for the blood left ventricle to pump blood to the rest of the body.
Read more about ATTR-CM signs and symptoms
This leads to symptoms that are similar to heart failure, namely fatigue, shortness of breath, coughing or wheezing, irregular heartbeat, heart palpitations and swelling of the feet, legs and abdomen.
Amyloid deposits can also accumulate in other parts of the body, including the brain, kidneys, peripheral nervous system and gastrointestinal tract. Associated symptoms can include dizziness, brain fog, tingling and numbness in hands and feet, nerve pain, diarrhea and nausea.
Any or all of these symptoms can significantly affect your quality of life by reducing your physical capacities, negatively affecting your sleep, affecting your professional activities and causing feelings of anxiety, isolation and depression.
Ways to improve your quality of life
A holistic approach to your health will support your well-being and help you live better with ATTR-CM. In addition to adhering to your medication, it is important to create healthy habits.
- Adopt a healthy diet. Eat a nutritious, balanced diet of unprocessed foods, healthy fats and lean protein. Reduce salt to avoid fluid retention.
- Stay active physically. Regular low-impact physical activity will strengthen your muscles, improve your blood flow, boost your mood and help you sleep.
- Stay active socially. Spend time with family and friends, doing things you like to do and adapting them to your physical needs.
- Establish a sleep routine. Create a calming, inviting sleep environment. Go to sleep and wake up at the same time each day.
- Learn to manage your stress. Meditation, stretching and breathing exercises can contribute to a more relaxed state of mind.
- Track your symptoms. Keep a symptom diary to better understand your symptoms and their evolution.
Making these habits part of your daily routine will proactively contribute to improving your overall well-being and quality of life. And be prepared to ask your health care providers for help when you need it.
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