Hypertrophic cardiomyopathy, HCM, is a disease that thickens the heart muscle. Some people do not notice the disease while others get short of breath, get chest pain, palpitations and fainting. Thickening of the heart muscle is most often found in the teens, but many people are diagnosed with HCM only at adulthood. Everyone can get the disease, but the risk is greater if you have a close relative with the diagnosis of HCM.
Many people have no symptoms at all and do not even know they have the disease. HCM can in some cases affect the heart’s pumping capacity, blood supply and electrical conduction systems. You may then have one or more of the following symptoms:
- You are breathless.
- You get chest pain.
- You get palpitations.
- You’re fainting.
Symptoms of physical exertion are common and HCM is often the cause of the sudden deaths that can occur in sports.
When and where should I seek care?
If you have been diagnosed with HCM, you should contact the reception where you received treatment if you feel worse and easier to breathe.
- You’re fainting.
- You get severe shortness of breath.
- You get persistent palpitations.
- You get chest pain.
What can I do for myself?
- Visit your doctor for regular check-ups.
- Take your prescribed medication regularly and at the right dose.
- Be careful with heavy physical exertion. Avoid competitive sports or intense sports. This applies to both static sports such as weightlifting and dynamic ones like running. Such activities can trigger serious rhythm disorders.
- Exercise regularly, but remember to adapt the activities to your ability.
- Don’t drink drunk. You can have acute symptoms and when you sober there is a risk of a special form of rhythm disturbance, atrial fibrillation. If you drink too much, your heart muscle may be weakened. You can then get chronic injuries.
- Avoid disturbances in the fluid balance. Stomach disease or other fluid deficiency can cause increasing symptoms, especially if you have a constriction that makes the blood flow more difficult.
- Always tell your doctor who prescribes medicine that you have HCM. Especially if you have to take drugs that are vasodilatory or fluid and that affect the heart rhythm.
Investigations and investigations
To make a diagnosis, a body examination , ECG and ultrasound examination of the heart is required . The doctor examines your heart, checks blood pressure and takes blood tests . Sometimes blood pressure is also recorded for 24 hours. The ultrasound shows how thick the walls of the heart are but also how the heart can pump blood and how the heart valves work.
You can do ECG both at rest and during activity, a so-called work test. The doctor also makes a 24-hour recording, a so-called tape recorder ECG. Sometimes a magnetic X-ray is made by the heart. In some cases, the doctor will take a tissue sample from the heart muscle to rule out heart disease.
Your doctor will decide what exams you need to do. To determine if you have a hereditary variant, the doctor also examines other family members with ECG and ultrasound.
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 special 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 a 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 HCM is just as common regardless of gender, but men develop HCM a little more often than women with the same sex.
In most cases, the disease is inherited from one of the parents. It is unusual for a new mutation to occur in a person. Should this occur, the person’s biological children may inherit the ancestry.
Surveys for you as a relative
Biological children for you who have hereditary HCM should do clinical examinations, ECGs and heart ultrasounds every two years from the age of six.
If a study has shown that you as a relative carry a disease, your heart should be examined to see if you have developed HCM or not.
You should examine the heart at two to five year intervals if you are carrying an illness or have a parent, child or siblings with HCM.
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.
HCM is a lifelong disease and the treatment is designed to relieve your symptoms. All treatment is done in consultation between you and your doctor.
Treatment with drugs
The most common treatment is with drugs, often called beta blockers. Then the blood pressure and the heart rate and the heart work more calmly and efficiently.
If you have symptoms of heart failure , you may need to take liquid or other medicines. Rhythm disorders such as atrial fibrillation and cardiac disorders can often be treated with drugs. If you have been ill for a long time and the pumping capacity of your heart has become weaker, you will receive treatment in the same way as for heart failure for other reasons.
Treatment with surgery
Sometimes a thickened heart muscle can lead to a constriction that makes the blood flow from the heart more difficult. The disease is then called hypertrophic obstructive cardiomyopathy, HOCM, and can cause similar symptoms as in HCM. You who have this form may primarily try treatment with drugs, but surgery may also be required. During an operation, part of the thickened part of the heart muscle is removed.
Treatment at risk of sudden death
You can get a so-called implantable defibrillator, ICD, if the doctor finds that there is an increased risk of sudden death. This applies, for example, if you have had repeated problems with severe heart palpitations or fainting or if you have survived a cardiac arrest. The defibrillator is operated and restores your normal heartbeat with an electric shock.
What happens in the body?
HCM is a disease that makes the walls of the heart thicker and stiffer than usual. Then the heart cannot pump blood properly, which can cause symptoms of heart failure. The abnormally thick heart muscle can suffer from oxygen deficiency so you get chest pain. The rhythm of the heart can also be affected so that you get a palpitations and can faint.
HCM is available in various forms, with or without constriction of blood flow from the heart. There is a difference between HCM and the thickening of the heart walls that can occur in diseases such as high blood pressure and diseases of the heart’s valves.
Many people experience no or only mild symptoms and live as long as most people, but how one can vary greatly between different people.
Getting a sick message
The diagnosis can be both unexpected and surprising. Knowledge of the disease is generally low and many have never heard of it. The diagnosis can lead to a number of questions and concerns. Before getting more information, there is often some uncertainty about what the disease means. Because it is usually hereditary, the message can also affect your closest relatives, not least biological children.
If the genetic investigation shows that you carry a genetic abnormality, a so-called mutation, that gives HCM, it has significance not only for you but also for your relatives. You should tell that there is a disease site for HCM in the genus and they can decide if they want to test themselves. Before such a test, they should be offered genetic guidance.
Pregnancy and HCM
In most cases, you who have HCM can handle pregnancy and normal childbirth well. But the risk of complications increases if you have symptoms of your illness before pregnancy. It is important that you who have HCM and plan to become pregnant talk to your doctor well in advance. The disease can affect possible drug treatment during pregnancy. It is also important that you get information about the heredity of the disease and the possible risk of transmitting a disease to the child.
Living with HCM
The problems you have with your illness vary greatly between different people. Most people have no or only mild symptoms and can live a normal life. HCM often gives the same kind of symptoms for a long time, but sudden changes can also occur.
It is important that you, as a wearer, see yourself as healthy if you are free of symptoms and have normal results on ECG and ultrasound. Whether you are a child or an adult, you can live as usual without medical treatment and restrictions on the way you live. The exception is to invest in elite sports and certain professions, such as pilots. If you develop HCM you may have to quit. Therefore, if you have such ambitions, you should talk to your doctor.