Living with transthyretin amyloid cardiomyopathy (ATTR-CM) means managing a set of symptoms that range from cardiac and neurological to gastrointestinal.
As amyloid deposits build up in the body’s tissue and organs, they cause damage and deterioration. When the gastrointestinal tract is affected, the resulting symptoms can often be difficult to manage, with pain and discomfort significantly affecting daily 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.
Early diagnosis, adherence to treatment and a healthy lifestyle can help ease the burden.
Gastrointestinal issues
Digestive issues occur when amyloid fibrils are deposited in the gastrointestinal tract, damaging the tissue and disrupting its function.
Read more about ATTR-CM signs and symptoms
Symptoms can also occur if amyloid deposits affect the nerves that run into the gastrointestinal tract. This is relatively common in hereditary ATTR-CM (hATTR-CM) and includes symptoms such as bloating, nausea, vomiting, chronic diarrhea, constipation, fecal incontinence, a feeling of fullness and weight loss.
Managing symptoms
Gastrointestinal issues related to ATTR-CM can negatively affect overall well-being, quality of life and the ability to maintain professional and social activities. It is therefore important to have a structured approach to symptom management that combines medical treatment and lifestyle-related aspects.
- Dietary adjustments: A nutritious diet of lean proteins that is low in fat and salt will be easier to digest. Small portions and plenty of water will also help avoid problems digesting your meals.
- Probiotics: Probiotics may help with digestion. Check with your health care team before taking them.
- Regular light activity: Low-impact physical exercise can help stimulate digestion and support your overall health and well-being.
- Adapted treatment plan: Talk to your health care team about medication to treat your range of symptoms to reduce the burden and effects on daily life.
- A symptom diary: Track your symptoms to see how they are triggered and whether they are getting better or worse. By better understanding your body and its reactions, you can learn to adapt your activities accordingly.
Strict adherence to your treatment plan and regular checkups with your health care team are key to managing your symptoms in the long term.
Long-term effects
As ATTR-CM progresses, the effect of amyloid buildup can cause the lining of the intestine to deteriorate. This can lead to poor vitamin and nutrition absorption, reduced immunity, chronic diarrhea, malnutrition and severe weight loss.
Heart failure medication may also be less effectively absorbed, increasing the risk of a cardiac event and exacerbating cardiac-related symptoms.
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