Living With Cardiomyopathy

Some people—especially those with hypertrophic cardiomyopathy—may live a healthy life with few problems or symptoms. Others may have serious symptoms and complications. Very rarely, cardiomyopathy can cause sudden death in young people.

Here are some things you can do if you have cardiomyopathy:

• Take all of your medicines as your doctor prescribes.
• Make all of the lifestyle changes recommended by your doctor.
• Go to all of your medical appointments.

You may need to take antibiotics before seeing the dentist or having certain medical procedures. This is important because it can prevent an infection in your heart (endocarditis).

Ongoing Health Care Needs

You should talk to your doctor if you notice new or worse symptoms, such as swelling in your legs or feet. These could be a sign that your condition is getting worse.

You also should talk with your doctor to find out how much exercise is right for you. People with hypertrophic cardiomyopathy should not exercise vigorously, but moderate exercise, such as walking, is often a good idea.

Your doctor can help you decide what kind of diet is right for you. Doctors will often recommend that people with hypertrophic cardiomyopathy drink lots of water and other fluids. Your doctor also may suggest a diet low in salt and fat.

Cardiomyopathy often runs in families. Your doctor may suggest that your parents, brothers and sisters, and children get checked every once in a while to see whether they have cardiomyopathy.

Support Groups

The Children's Cardiomyopathy Foundation provides support and information to parents of children with cardiomyopathy.

Long-Term Care, Hospice, End-of-Life Issues

Cardiomyopathy can have serious complications, such as heart failure, serious arrhythmias, or sudden cardiac death. It is important that you discuss these possibilities with your family and your doctor and prepare for them.

Advance directives are documents that tell doctors and hospitals what treatment you want or do not want if you are too ill to speak for yourself. If you have a serious condition for which there is no cure, you may decide that you only want treatment to make you comfortable. You may or may not want treatment if your heart or breathing stops. Advance directives are a way for you to record your wishes about such treatment ahead of time.

As long as you are able to make your own decisions, your advance directive will not be used, and you can accept or refuse any medical treatment. But if you become seriously ill, you may not be able to make decisions about your own treatment.

Two types of advance directives include a living will and a medical power of attorney. A living will provides directions and instructions about your health care preferences. A medical power of attorney names a person you trust to speak for you when you are unable to make decisions.

Advance directives are easy to prepare. You can do it yourself without a lawyer, as long as you are 18 years or older. You may prepare your advance directive by:

• Simply writing down your wishes
• Completing a form that your doctor, the hospital, or the health department may have
• Using a special computer software program for legal documents
• Going to a lawyer

Depending on the State where you live, the document also may need to be witnessed by one or two people or notarized.

Give a copy of your living will and/or medical power of attorney to a family member and keep another copy in a safe place. People with severe heart failure are in the hospital often. It is important that you or a family member bring copies of advance directive documents every time you go to the hospital.

Hospice Care

If you have heart failure that gets worse over time, your treatments may eventually stop working. If you and your doctor agree that your treatments are not working, hospice care may be an option. Hospice is an organization that can comfort and support you and your family. A team of people provides hospice care. This team includes doctors, nurses, social workers, nurses' aides, chaplains, and volunteers.

The goals of hospice care are to provide:

• Comfort rather than cures
• Emotional support to you and your family
• Care that supports dying with dignity
• Spiritual support as requested by you and your family

Hospice supports life and views dying as a natural process. Hospice will work with you and your family to provide the services you need.

Research

If you are diagnosed with cardiomyopathy, you should ask your doctor about any research studies available that you may be eligible to enroll in. Research studies often provide focused attention on questions about diagnosis and treatment. The researchers conducting studies are generally experts in the field, and they may assist you and your doctor, while also gaining information that could be helpful to other patients with cardiomyopathy.