Living With Cardiomyopathy
Some peopleespecially those with hypertrophic
cardiomyopathymay 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.
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