Living with heart failure

Cardiac rehabilitation

Taking regular exercise will improve the overall health of your heart. However, an exercise programme that is led by a health professional can help people with heart failure to breathe more easily and improve their quality of life.

If these programmes are available in your area, they are likely to be part of a service called cardiac rehabilitation.

Most people on cardiac rehabilitation programmes will either have had heart surgery or a heart attack, but the programmes are also useful for people with heart failure.

They are usually run in hospitals by cardiac rehabilitation teams, which include various healthcare professionals, such as nurses, physiotherapists, occupational therapists and exercise specialists.

The exercise programmes vary widely across the country, but most cover one or more of the following:

• exercise
• education
• relaxation and emotional support

Before you start, you will have an assessment to find out how much exercise you can safely do. The programme worker will tailor a programme of exercises specifically for you. You will be encouraged to start slowly and gently and to gradually increase the amount of exercise you do over the week. You should work within your limits and follow the advice you are given.

The sessions will begin with warm-up exercises. The main part of the session will be aerobic exercises that help your heart and circulation. Some programmes use special equipment, such as exercise bikes, and others will include exercises you can do in a chair.

You may be asked to monitor your heart rate while you exercise by using a small machine called a heart rate monitor that you can hold or strap to your wrist. This is to ensure your heart does not work too hard.

At the end of each session, there will be a cool-down phase that will involve stretching your muscles to help stop them aching the next day.

The education part of the programme will give you information on healthy eating, recognising and avoiding stress, and practical ways to reduce your risk of further damage to your heart. Many programmes also focus on different ways to relax and finding a technique that suits you.

The British Heart Foundation website has a postcode search facility that you can use to find a cardiac rehabilitation programme in your area. You can also read more about recovering from a heart condition.

Feelings and relationships

Being diagnosed with heart failure can be a shock. Some people feel scared, anxious, depressed or angry. They may feel unable to enjoy the things they used to, or to cope with everyday life. It is estimated that around one in five people with heart failure have depression.

You should seek help if you think that you are depressed. Not only does depression reduce your ability to enjoy life, but it can make your heart failure symptoms worse.

Understandably, heart failure can make you worry about your health and how it affects your family. Many people also find that their physical relationship with their partner changes after they have been diagnosed, due to worries about having a heart attack, or losing interest in sex, or being unable to get an erection (which can sometimes be caused by your medication).

It is important that you discuss any worries or problems you have with your doctor or nurse if you feel unable to talk to your family. Many people do not want to burden those closest to them with their worries.

Your doctor or nurse will be able to advise you and arrange support. You may also find it helpful to join a heart support group where you can talk to other people with heart conditions whose circumstances are similar to yours.

You can call the British Heart Foundation’s heart helpline on 0300 330 3311 to find out about support groups in your area.

Travelling

Being diagnosed with heart failure should not prevent you from travelling or going on holiday, as long as you feel well enough and your condition is well controlled. If you have heart failure, check with your doctor before you travel.

Ensure that you inform the airline, who may provide a wheelchair or electric car so that you can avoid having to walk long distances in the airport.

Anyone travelling and sitting still for a long time, either in a car, coach or on a plane, should do simple exercises to reduce the risk of deep vein thrombosis (DVT). When flying, you should wear flight socks or compression stockings to keep blood flowing through your legs and reduce the risk of DVT.

You should also be aware that your legs and ankles may swell when flying and breathing may become more difficult if you have severe heart failure.

It may be a good idea to take two sets of medication with you when you travel. Carry them in different places in case you lose one, and make a list of the medication you take and what it is for.

Having heart failure should not stop you from getting travel insurance, but you may have to find a specialist company that will insure you.

You can read more about holidays and travel on the British Heart Foundation’s website.

Work and financial help

Can I continue working?

If you are well enough, it is important to keep working for as long as you feel able. With the right support, staying in work can make you feel better and give you financial security. 

Talk to your employer as soon as you feel that your heart failure is affecting your ability to do your job so that you can find a solution that suits both of you. For example, it may be possible for you to work part-time.

The Disability Discrimination Act (DDA) requires employers to make reasonable adjustments to working practices or premises to help a person with a disability. This might, where possible, include changing or modifying tasks, altering work patterns, installing special equipment, allowing time off to attend appointments or helping with travel to work.

What happens if I can no longer work?

If you cannot continue working due to heart failure, you may be able to claim disability and incapacity benefits.

People over 65 years of age who are severely disabled may qualify for a type of disability benefit called Attendance Allowance.

Find out more about money issues on the British Heart Foundation’s website.

Help for carers

Carers may also be entitled to some benefits, depending on their involvement with the person with heart failure. You should find out whether you are getting all the benefits you are entitled to.

Read more about benefits for carers and benefits for the person you care for.

Caring for someone with heart failure

Looking after someone with heart failure can mean anything from helping with visits to their GP or hospital clinic to collecting prescriptions or full-time caring for someone with more severe heart failure.

There are many ways you can support someone with heart failure. Heart failure can be disabling and distressing, and many people with the condition find it a huge relief to share their concerns and fears with someone who cares.

As a carer, if you can attend GP and hospital appointments with the person with heart failure, you can encourage them to ask the right questions while you note down the answers. You could also provide the doctor with additional information or insights into the person’s condition, which can be helpful for planning the right treatment.

Another way that you can help is by watching for warning signs that the person’s heart failure is getting worse, or if they are not responding to treatment. Contact the person’s doctor if you notice a new symptom, or if their current symptoms are getting worse.

Signs to look out for include:

• shortness of breath that is not related to usual exercise or activity
• increased swelling of the legs or ankles
• weight gain of more than 1.8-2.3kg (4-5lb) over a few days 
• swelling or pain in the abdomen (tummy) 
• trouble sleeping, or waking up short of breath
• a dry, hacking cough
• increasing tiredness, or feeling tired all the time

Read more about all aspects of caring for someone with a long-term health problem. 

What will happen towards the end?

When heart failure gets more severe, a person may become more and more immobile.

Breathlessness can get worse and can become distressing. Increased intensity of treatment, sometimes including morphine (opioids), may be required to control breathlessness.

Some people also find that grumbling, low-level aches and pains become more of a problem as their heart failure gets worse. Opioids can also help relieve pain.

What is palliative care?

Palliative care is the support and care of a person’s symptoms when there is no cure for their condition. Your doctor or nurse may suggest that you see a specialist or nurse in palliative care or a counsellor.

A palliative care team will focus on controlling your symptoms, keeping you as comfortable and as pain-free as possible, as well as offering physical, psychological, spiritual and social support for both you and your family.

What decisions do I need to make?

The things that you will need to consider are listed below.

• Making a will if you have not made one already.
• An advance statement lets those close to you know about the type of care you would like and where you want it – for example, at home, at hospital, or in a hospice – if you are not able to decide for yourself. While you can write down your wishes about what sort of future treatment you do and do not want, doctors can override your decision if they think it is in your best interests.
• Whether you want to make a living will (this is called an advance decision). This allows mentally competent people to refuse some or all forms of medical care in the future when they are unable to make their own decisions or tell doctors what they want (for example, if they are in a coma). This is legally binding, so doctors must comply with your wishes.
• Whether you want to be resuscitated if your heart stops.  
• Whether you would want your defibrillator turned off (if you have one).

Read more about end of life care and making advance decisions.