Managing Cardiomyopathy

The outlook for people living with dilated or restrictive cardiomyopathy varies widely. Some people live healthy, long lives free of symptoms, unaware that they even have the disease. For most people, symptoms of heart failure gradually progress over time; in a minority of individuals, the symptoms start suddenly and the disease progresses rapidly. No matter the scenario, your health needs to be monitored closely in order to make decisions about treatment options.

Overall, about two thirds of people with newly diagnosed heart failure die within five years. However, there is considerable individual variation depending on severity of symptoms and how effectively the symptoms can be treated. For people with minor symptoms that appear only with extreme exertion, fewer than 5 percent die in the first year. But for those who experience debilitating symptoms while at rest, more than 50 percent may die in six to 12 months. This latter group should be considered for other therapies such as heart transplant and LVAD.

When to See the Doctor

People with dilated or restrictive cardiomyopathy should see their healthcare provider regularly; your physician will decide how often based on your condition.

In addition, seek out medical attention if you experience:

• A decrease in activity tolerance--things that you used to be able to do become more difficult
• Onset or increase in severity of symptoms including chest pain, fatigue, dizziness, and irregular heartbeats
• Sudden weight gain or loss
• Unexplained fever
• Changes in breathing, including increased difficulty breathing and shortness of breath

Lifestyle Choices

Healthy lifestyle choices are fundamental to minimizing the symptoms of heart failure associated with dilated and restrictive cardiomyopathy. These include:

• Control high blood pressure. Maintaining a healthy blood pressure is fundamental to surviving with heart failure.
• Control salt intake. Salt consumption leads to fluid retention, which increases the workload on the heart.
• Avoid caffeine and alcohol. Alcohol and caffeinated beverages can increase fluid retention.
• Maintain a healthy weight. Excess weight increases the workload on the heart.
• Exercise regularly. Regular moderate exercise is beneficial for the heart and reduces stress. Develop an exercise plan with your healthcare provider and follow it.
• Avoid strenuous activity.
• Take medications as directed.
• Abstain from tobacco and recreational drugs. Tobacco and illegal drugs increase the workload on your heart and can interfere with your heart rhythm.
• Get adequate sleep and rest. This helps promote overall health, including the health of your heart.