Adjusting to life with atrial fibrillation

A diagnosis of atrial fibrillation will have life-long effects and you may have worries about what your condition means for the future. Read our tips for managing your condition so you can continue to lead a full and active life.

Newly diagnosed

If you've just been diagnosed with atrial fibrillation (AF), you've probably got a lot of questions. You may be wondering about the severity of your condition and your prognosis. It's normal to experience a range of emotions at this time including uncertainty, fear, anxiety and low mood.

The good news is that although AF is a long-term condition, if managed correctly, you can continue to lead a long and active life. There are a number of steps you can take that will help you manage your condition, lower your risk of stroke and relieve any worries you may have. These include:

• Learning about your condition, its symptoms, causes and treatments
• Making the most of your support network (including those close to you and your healthcare team)
• Hearing from others who are living with AF.

Research has shown that people who have a good understanding of their AF report fewer symptoms, feel more in control of their condition and feel less distressed by it.

First experiences of atrial fibrillation

First experiences of atrial fibrillation (AF) differ greatly. Some people have no obvious symptoms and their AF is picked up during a routine visit to their doctor or nurse. For others, their first AF episode can be a dramatic, frightening event for both them and their families. Whatever your experience, you are likely to face a period of emotional adjustment following your diagnosis, as you learn about your condition and consider what it might mean for your future.

One of the major concerns for people with AF is their increased risk of stroke. (You are five times more likely to have a stroke if you've been diagnosed with AF even if you don't have AF symptoms, or rarely have an AF episode). However taking your medication reduces this risk significantly.

It's a good idea to make sure you understand the medication you've been prescribed. You can read more on our diagnosis and treatments page. We've also got some great tips on ways to manage your medication easily and safely.

If you have paroxysmal (intermittent) AF you may also be wondering when your next AF episode will occur. To help you identify any possible triggers, it may be helpful to record any attacks and what you were doing leading up to them. You can also find out more about treatments that help manage your atrial fibrillation.

Remember if you've just been diagnosed with AF, you're not alone. Your condition affects more than 80,000 other kiwis. Sometimes hearing from others can be a good way to relieve some of your worries and find out more about what it's like to live with.

Visit our Journeys page to hear from others with atrial fibrillation or watch Nikki's story below.

Setting goals for heart health

As well as starting your treatment plan, making some changes to your lifestyle can help improve your health, manage your AF and lower your risk of complications, such as stroke or heart failure.

Setting goals is a good way to help you achieve the lifestyle changes you want to make. It's important to make sure that your goals are realistic and achievable. You're more likely to succeed if you:

• Set a goal that is really important to you and write it down
• Plan how you are going to achieve the goal
• Get support from those around you
• Brainstorm how you can overcome challenges and build your confidence.

You can find out more about how to set realistic achievable goals on our goal-setting page.

Keeping your relationships strong

It's likely your AF diagnosis will affect those close to you. It's normal for family members and other loved ones to feel scared or anxious about your diagnosis.

Often AF has no obvious, visible signs making it hard for those around you to understand what you are going through. This can lead to frustration and resentment. That's why good communication with your family/whānau is really important.

Having open and honest conversations can lower your stress and encourage the closeness and emotional support that you need. No one, including children, should be excluded from these conversations. Children can often blame themselves when their parents become unwell, so it is important to explain to them what has happened and why it has happened.

Tips for good communication

• Pick a time when there are no distractions to talk with your family about your condition
• Express your feelings in a positive way - use "I" statements rather than "you" statements
• Ask for help
• Make a note of questions.

You can find some suggested questions to discuss with your doctor or nurse on our diagnosis and treatments page.

Will my family develop atrial fibrillation?

Sometimes AF can run in families. This type of AF is called familial atrial fibrillation. Recent research suggests as many as 30% of all AF cases may be familial.

Although genetics aren't always the cause of AF, the research shows your family is at greater risk of getting AF if you've been diagnosed with it.

If you are worried about this, have a chat to adult children and close relatives about the early symptoms you experienced. You could encourage them to talk with their doctor about their risk of AF.

Sex and intimacy

Intimacy and sexual relationships are often a big concern for people following an AF diagnosis. A 2015 study found that a third of people diagnosed with AF avoided sex because they were worried that it would trigger heart palpitations.

It is also common for the partners of people with AF to worry that sex might be bad for their loved one's health. This can lead to people losing interest or confidence in having sex, which in turn negatively impacts on their relationship.

In fact, sex - like other forms of exercise - is good for your heart health and your general wellbeing. Sex strengthens your heart muscle, relieves stress and boosts your immune system.

Sometimes atrial fibrillation can result in problems getting an erection (erectile dysfunction). Some medications prescribed for AF can also cause a problem. Talk to your doctor if you're having trouble with your sex life as they may be able to adjust your medication or find other ways to help.

It's also important you talk to your doctor before using medication to try to improve your sex life. This includes both pharmaceutical medications (such as Viagra) and herbal or complementary therapies.

Exercise and atrial fibrillation

When you're first diagnosed with AF, you may be worried that exercise might trigger an episode or make your condition worse. In fact exercise is very important for your ongoing health and wellbeing. Regular exercise:

• reduces your risk of stroke
• reduces AF symptoms
• can lower your resting heart rate over time
• reduces your risk of other heart disease
• helps you manage your weight
• improves your mood and sense of wellbeing.

Cardiac rehabilitation classes

It's a good idea to talk to your doctor before starting an exercise plan. Cardiac rehabilitation classes are a great way to get started if they're available in your area.

Get a green prescription

You could also consider a green prescription, which is a free, New Zealand Government-funded programme that provides exercise advice to people with chronic conditions such as AF.

If you are just starting to exercise or find that you're tiring more easily, build up your activity gradually. Your energy levels will improve and you will eventually be able to do more exercise.

Taking small steps to build your confidence

There are small steps you can take to build up your confidence to exercise. You may only do 5 to 10 minutes of walking around the house. If you can walk around the house easily, look to increase this by a minute the next day and so on. Ideally you should aim to build up to five half hour sessions of cardio exercise a week.

The exercise doesn't need to be high intensity, it can be low to moderate exercise such as walking or a bike ride. If you want to increase the intensity slightly, you can include some hills but make sure you've had an adequate warm up before you start. Exercise such as yoga or pilates can also be good for lowering your heart rate.

The talk test may also be useful to help you find the right level of exercise for you.

• When you are at the right level of exercise, you should be able to feel your heart pumping harder but still be able to talk comfortably.
• If you are too breathless to talk, then it’s time to slow down.
• If you are able to sing or whistle, then you could step up the pace.

If you're getting chest discomfort, lightheadness or dizziness, or excessive shortness of breath, stop exercising straight away and talk to your doctor.

Dealing with fatigue

According to research, fatigue (tiredness) is one of the most commonly reported symptoms of AF (along with shortness of breath and heart palpitations). This may occur for a number of reasons, including:

• the speed and/or irregular rhythm of your heart
• the fact your heart might not be functioning as effectively as normal
• side effects of your medication
• the underlying cause of your AF (for example, thyroid problems).

There are a few ways to try and manage this fatigue. Try to keep your heart at a normal rate and rhythm as much as possible. Try to avoid things that trigger your AF and remember to take your medication as prescribed.

Regular exercise, a healthy diet and quality sleep also play a key role in preventing fatigue. If you think your medication may be partly responsible, you could talk to your GP to see if there's an alternative drug. Never stop taking your medication without talking to your doctor first.

Fatigue is also sometimes a symptom of depression, so talk to your GP if you need professional support.

Foods to eat and foods to avoid

When you've been diagnosed with AF, the best kind of eating programme to follow is a heart healthy eating plan. The plan will help you manage your atrial fibrillation symptoms and reduce your risk of other types of heart disease.

A heart healthy diet means eating a dietary pattern based largely on minimally-processed foods with plenty of vegetables and fruit. Include some intact whole grains in place of refined grains: legumes, nuts, seeds and other sources of healthy fats such as oily fish. You can also include non-processed lean meats or poultry and/or dairy.

The diet also means cutting back on foods that are high in saturated fats and trans fats, salt (sodium) and sugar. You'll find more about how to follow a heart healthy eating pattern on our nutrition pages.

There are also some foods you'll need to avoid if you're taking certain medications. If you're on warfarin you'll need to make sure you don't eat large quantities of vitamin K. Foods that contain high levels of vitamin K include:

• leafy green vegetables, such as spinach and kale
• cauliflower
• parsley
• green tea.

If you're on anti-arrhythmic drugs, such as amiodarone, you'll need to avoid grapefruit as it can make your medication less effective.

You may also need to avoid other substances that trigger AF, such as alcohol and possibly caffeine. You can read more about triggers on our managing your AF page.

Taking steps to improve your mental wellbeing

Everyone's experience of AF is different. Some people cope well with the condition but for others an AF diagnosis can be very traumatic leading to a loss of self-confidence, anxiety and sometimes even depression.

If you are feeling down, there are positive steps you can take to improve your mental health and well-being. These include:

• getting regular exercise
• getting enough sleep
• eating a healthy diet
• talking to friends and family about how you're feeling
• finding a local cardiac support group in your area.

However, for some people, these steps alone may not be enough to improve your mental wellbeing. If your negative feelings continue for more than a couple of weeks or are particularly extreme, it's important to seek professional help. Talk to your doctor or nurse at your local GP practice or visit depression.org.nz for further information.

How soon can I drive?

If your AF is well managed and you are symptom-free, you will generally be able to continue driving without restrictions. However, if you have had blackouts or severe dizziness with your AF you should not drive until your condition is stabilised.

If you have a vocational driver's license it will need to be assessed. If you have had a blackout or severe dizziness with your AF you may have a 6 month stand-down.

Discuss any concerns with your doctor.

If you ever have an AF episode while driving, you should immediately pull over and seek help.

Travelling with atrial fibrillation

If you're planning a holiday, it is best to discuss it with your doctor first. You may be advised not to travel until your AF is stable.

If you are going overseas you will need a travel insurance policy that will cover you for pre-existing conditions.

Here's a list of things to consider before you finalise your travel plans:

• Ask your doctor about immunisations that you may need to have and whether these will interact with your current treatment.
• If you are planning on travelling to a country that has a time difference, talk to your doctor or pharmacist about your medication regime and how best to maintain this.
• If you're on warfarin ask, about self-monitoring while you are on holiday.
• Ensure you've got enough medication to cover the time that you're away. Pack extra medication in your hand luggage and in your hold luggage, in case something goes missing.
• Get a record of your medication (types and doses) to carry with you. This will be helpful if you're asked about your medication at customs or if you need to seek medical help while you're away. It's also a good idea to take your doctor's phone number and email address with you.
• Consider getting a medic alert ID such as a card, bracelet or necklace. This can include information about your medical condition(s), prescriptions, any implanted devices you may have and your doctor's contact information. For more information visit - www.medicalert.co.nz
• Ask your doctor any precautions you may need to take or any other concerns that you may have.

What about monitoring INR levels while I'm away?

If you're on warfarin, you'll need to think about how you monitor your INR levels while you're away. Talk to your doctor about how the health system works at your destination and what costs might be involved.

During your journey

• Give yourself plenty of time to check-in at the airport to avoid unnecessary stress.
• If you're flying you should wear compression stockings to reduce your risk of blood clots.
• Get up and move around frequently. Sitting for extended periods can affect your circulation.
• Keep hydrated - Drink water and avoid drinking too much alcohol.

How will atrial fibrillation affect my work?

Most people with AF are able to continue working. As long as you can ably manage your work with your AF, there are considerable benefits in returning to your job. These include:

• participating in some form of physical activity on a work day
• socialising and being part of a team
• improving self-esteem and allowing you to feel like you are making a contribution to your family and society
• giving a structure and routine to days and weeks
• providing financial security.

Things to consider before you return to your job

There are some people who find it difficult to return to work or to their existing role - particularly if their symptoms aren't well controlled. Talk with your employer if you are concerned that AF will affect your ability to do your job.

If you have a pacemaker implanted to manage your AF, check with your doctor that it is safe to go back to work. Some work places may have machinery that interferes with your pacemaker. You can find out more about what you may need to avoid on our pacemaker page.

It is also important to consider your levels of stress at work. A recent study in the European Journal of Preventive Cardiology found that being stressed at work was associated with a 48% higher risk of atrial fibrillation.

When you're first diagnosed, you may need to have time off work for treatment and as you start new medication. Your doctor can advise you on the best time for you to return to work.

Medical certificate

Tell your employer about any medical and recovery advice your doctor or healthcare team has given you. Discuss the details of your medical certificate with your employer. The medical certificate may indicate, for example, that you’re not fit for work for a period of time or that you may be fit for work under certain conditions, such as:

• a phased return to work
• altered hours
• a change in work duties
• occupational health

If your employer has an occupational health department, they can give you further help and advice about returning to work such as determining what workload is suitable. They may also be able to offer counselling.

If you think your condition will prevent you from returning to work, you can find more information about health and disability benefits available to people with chronic health conditions from the Ministry of Social Development.

Planning for emergencies

It's a good idea to have a plan in case an emergency situation arises at work, for example if you have:

• an AF episode while at work
• a bleeding injury while at work and are taking anticoagulant medication

This is something you should discuss with your employer or your occupational health team.

Driving at work

If you hold a vocational licence and drive trucks, passenger vehicles, fork lifts, courier vans etc., a symptom-free period of at least six months is generally required before you are deemed fit to drive. Your licence may also be subject to the condition of an annual cardiac assessment.

You'll need to talk with your doctor and contact the NZ Transport Agency (NZTA) about how your condition may affect your job. You should also check with your insurance company to make sure you are fully covered.

Living with atrial fibrillation

AF is a life-long condition that changes over time but there are things you can do to help manage your condition. 

Managing your atrial fibrillation