Dilated cardiomyopathy, DCM

Dilated cardiomyopathy, DCM, is the collective name for a number of conditions. Common to them is that the heart muscle becomes weaker and the heart cavity dilates without the cause of high blood pressure, coronary artery disease or heart valve failure. The disease is sometimes hereditary.

The causes of the disease are not fully known. But the risk of getting DCM increases if you have hereditary changes in heart muscle, heart muscle inflammation or long-term heart rate with a high heart rate. The risk also increases if you drink a lot of alcohol, use drugs or undergo certain cytostatic treatments.

Symptoms of dilated cardiomyopathy

DCM causes you to have heart failure. Here are some common symptoms of heart failure:

  • You are tired and less able.
  • You are easily breathed.
  • You have swollen ankles and legs.
  • You have a stomach ache and may be difficult to eat.
  • You have palpitations.
  • You have trouble sleeping flat.
  • You often need to get up and pee at night.

Here are some symptoms of severe heart failure, which can be life-threatening:

  • You are very tired.
  • You will get severe shortness of breath and perhaps rattling breathing.
  • You get a feeling of tightness or chest pain.
  • You become cold-sweaty and have palpitations.

When and where should I seek care?

If you are short of breath and tired, if you think you have heart failure or if your heart failure worsens despite treatment, contact a health center or emergency room. You can contact many receptions by logging in. 

If you experience worsening breathlessness and fatigue, contact a health care center or an on-call clinic immediately. If it is closed at the health center or on-call reception, seek care at an emergency room.

What can I do for myself?

  • Your symptoms can decrease with physical activity and regular exercise at a level that is right for you. However, you should not engage in intense physical activity or competitive sports.
  • Take your medication regularly and at the right dose.
  • Go on a regular visit to a doctor and maybe also a heart failure nurse.
  • Abstain completely from alcohol and drugs if your condition depends on it.
  • Stop smoking.
  • Eat vegetables and fruits daily and reduce the amount of salt in the food.
  • Avoid drinking too much, both alcohol and other liquids.

Diseases such as diabetes, angina, heart attacks, and high blood pressure are common causes of heart failure and can, therefore, worsen the condition if you have DCM. A healthy lifestyle can promote good health and reduce the risk of these diseases. If you already have any of these diseases, it is primarily important to follow the recommendations you have received regarding treatment.

Investigations

Investigations of DCM or suspected heart failure include body examination, ECG, blood tests and heart ultrasound examination. Occasionally, work ECGs, contrast x-rays of the coronary arteries and other examinations are also performed.

Of the cases where no underlying cause of the disease can be found, about a third are hereditary and are due to changes in our inheritance, so-called mutations. It is considered that the disease is hereditary if there are several cases of DCM in a family. 

Genetic investigation

If the doctor suspects that the disease has been inherited, it may be relevant to investigate relatives with whom you share genes, such as parents, siblings or children. The investigations are done at special cardiogenetic clinics at the country’s university hospital. In a specific blood sample, it is possible in some cases to detect genetic changes that indicate that the disease is inherited.

You run a 50 percent risk of inheriting the disease and getting the disease if one of your parents has the hereditary form of the disease. On the other hand, all carriers do not become ill. You can only get sick and pass the disease on to your biological children if you have inherited it. Hereditary DCM is equally common regardless of gender. 

In most cases, the disease is inherited from one of the parents. It is unusual for a new mutation to occur in a person. If this occurs, the person’s biological children may inherit the ancestry.

Influence and participate in your care

You can seek care at any healthcare center you want throughout the country. You also have the opportunity to have a regular doctor’s contact at the health center. 

In order for you to be able to participate in your care and make decisions, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. You can also ask for information printed so that you can read it peacefully.

Treatment for dilated cardiomyopathy

The treatment of dilated cardiomyopathy is the same as for heart failure for other reasons. If your doctor identifies a cause of the disease that can be cured, it is the most important treatment.

What happens in the body?

DCM is a disease that causes the left ventricle of the heart to expand abnormally and cause impaired pumping capacity, leading to heart failure. In the event of heart failure, the heart cannot pump out enough blood to the body. This causes the cells to get too little nutrition and oxygen. The body then activates a hormone system that further counteracts the work of the heart. Heart failure symptoms are due to a combination of the heart’s impaired pumping ability and an activated hormone system.

Occasionally, the right ventricle of the heart may also be affected by DCM, with a reduced pumping capacity. It can also lead to stomach upset and fatigue.

Getting a sick message

The diagnosis can be both unexpected and surprising. It can lead to a lot of questions and concerns. Before getting more information, there is often some uncertainty about what the disease means. Because it is sometimes hereditary, the message can also affect your closest relatives, not least any biological children.

It also matters to your relatives if the genetic investigation shows that you carry a genetic aberration, a so-called mutation. You should tell that there is a disease facility for DCM in the genus and they can decide if they want to test themselves. Before such a test, they should be offered genetic guidance.

Relatives carrying a medical condition should have their hearts examined to determine if they have developed DCM or not.

Pregnancy and DCM

It is possible to have children if you have DCM. However, heart function can be impaired during pregnancy. Therefore, if you want to have children, you must first discuss it with a heart specialist. Many cardiac medications can be harmful to the fetus and should not be taken, especially not at the beginning of a pregnancy. You run the risk of impairing your heart’s ability to pump blood if you stop taking the drugs.

The changes in the body that pregnancy entails can also lead to an increased strain on your heart. Since DCM is sometimes a hereditary disease, one must also discuss the child’s possible risk of inheriting a predisposition to the disease.

There is a special form of DCM that can occur from the last month of pregnancy to about five months after birth. It is called peripartum cardiomyopathy. In these cases, the heart will function normally before pregnancy.

Living with DCM

The symptoms and treatment of DCM are the same as with other heart failures.

A person with mild to moderate heart failure and the right treatment can live about the same as a peer with no heart failure. An exception is that you who have DCM should be careful with heavy physical exertion. You should avoid competitive sports or intense sports activities. You who have DCM should go to your doctor’s regular checkups and avoid alcohol and other drugs.

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