If you are a young person living with childhood-onset heart disease (CoHD), taking medication may be an important part of looking after your heart and staying well.

This factsheet explains why medications are prescribed, what to do if you experience side effects, how to manage your prescriptions, and where to find support if you need help paying for medications or remembering to take them.

Understanding your medications is an important step in becoming more confident and independent in managing your health.

Why do I need to take heart medications?

If you have CoHD, medications can help your heart work more effectively. Depending on your condition, they may help your heart beat normally, manage blood pressure, reduce fluid build-up, or lower the risk of blood clots.

Always take your medications exactly as prescribed and never stop taking them without speaking to your healthcare team first.

What if my medication feels different as I get older?

As your body grows and changes, your medication needs may change too.

You may notice medications affect you differently over time, which is why regular reviews with your cardiologist or healthcare team are important. If something doesn’t feel right, let your healthcare team know so they can assess whether any changes are needed.

What should I do if I experience side effects?

All medications can potentially cause side effects, even though they undergo strict safety testing before being approved for use in Australia.

If you notice anything unusual after starting a medication or changing your dose, talk to your doctor, cardiology nurse or pharmacist. Sometimes side effects are temporary, while other times your healthcare team may decide to adjust your treatment.

Why is it important to know my medications?

As you become more independent, it’s important to know:

• The names of your medications
• What they are for
• When you take them
• The dose you take

This information can be especially important in an emergency or when speaking with healthcare professionals.

What happens if I run out of medication?

Try not to wait until you’ve taken your last tablet before organising a refill.

If you’re running low, contact your doctor, pharmacist or healthcare team as soon as possible. Some medications are particularly important to continue without interruption, including blood-thinning medications such as Warfarin.

How can I afford my medications?

There are a number of programs that may help reduce medication costs, including:

• Medicare and the Pharmaceutical Benefits Scheme (PBS)
• Health Care Cards
• Closing the Gap (CTG) support for eligible Aboriginal and Torres Strait Islander people

Your pharmacist, GP, hospital social worker or the HeartKids support team can help you understand what assistance may be available to you.

How can I remember to take my medication?

Many young people find it difficult to remember medications every day. Helpful strategies include:

• Setting phone reminders
• Taking medications at the same time each day
• Using a pill organiser or Webster pack
• Keeping track of prescription renewals
• Planning ahead before appointments

Finding a routine that works for you can make managing your medications much easier.

Taking charge of your health

Learning about your medications and taking them as prescribed is an important part of managing your heart condition.

The more confident you become in understanding your medications, the more prepared you’ll be to take an active role in your healthcare and transition into adult care services in the future.

This resource was developed by HeartKids with input from registered nurses. Content was informed by young people living with childhood-onset heart disease and reviewed by the HeartKids Clinical, Research and Support Advisory Committee.