Supporting the New Zealand Adult Congenital Heart Community
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Looking After Your Own Health
Taking control of your own health is really important for congenital heart teens and young adults.
In the same way that you want to be in control of other parts of your life, you want to be in control of your health too. To do this you need to focus on learning some more about your heart condition, your medications and what it means for other aspects of your life. The sections below will help you to work out what you need to focus on to give you the knowledge and confidence to get used to taking charge as you move through your teens into your young adult years.
What’s it called?
A great starting point is to learn the name of your heart condition. Some of them are a bit of a mouthful, but it’s a good first step to taking control.
This means you can tell other people what it is, for example other health professionals. It also puts you in a position to search for more info about your heart.
What does it mean?
Learn what your heart condition means so that you could describe it to someone else.
This helps you to start to understand what your medical team are talking about and gives you knowledge to make your own decisions.
Trying to draw a picture of your heart can be helpful too.
Keep Important Information
When you see your medical team, you will usually be sent a copy of the letter. Keep this so that you have your own record. You may also want to share it with your family to help explain what we talked about.
You can keep the letter, or many people prefer to take a photo of it and store it on their phone.
Health Appointments
Keep a record of your hospital appointments for clinics and tests. Put them on your phone calendar so you don’t forget.
Make sure that you know where to go for clinic or hospital visits and how to get there.
Keep a record of the number to call if you need to make an appointment.
MedicAlert and ICE
A MedicAlert bracelet can be a good idea for some people, for example if you are on warfarin or have a pacemaker.
A good alternative is to use the ICE app (in case of emergency) or an equivalent app on your phone. The ambulance guys know to look out for this information.
Get to know your Team
Get to know who is on your medical team and what they do. You will usually have a doctor and senior nurse and sometimes other specialists like a psychologist.
Find out how to get in contact if you are concerned about your health or if you have any questions.
Understand your Medicines
Learn the names of your medicines, what they are for and when to take them.
Work out ways to make sure you remember to take your medicines without someone else having to tell you. Putting a reminder on your phone is a good start.
Learn to be Safe with Alcohol and Drugs
Alcohol can affect your heart and can interact with certain medications. Make sure you learn about how alcohol affects your health.
Drugs can be dangerous and can be particularly bad for people with some heart conditions. Keep yourself safe by being informed. Remember that knowledge is power.
Pregnancy and Contraception
Make sure you understand whether your heart condition affects the types of contraception you can use. Some types can make blood clots more likely.
Also learn about how pregnancy would affect your heart so that you can plan ahead when the time comes.