Congestive heart failure - Living with heart failure

Heart failure - Living with heart failure

NHS Choices Medical Reference

Cardiac rehabilitation

While taking regular exercise will improve the general health of your heart, exercise programmes led by a health professional can help people with heart failure breathe more easily and improve the quality of their life. If these programmes are available in your area, they are likely to be part of a service called cardiac rehabilitation.

Most people on these programmes will either have had heart surgery or a heart attack but the programmes are also good for people with heart failure. They are usually run in hospitals by a cardiac rehabilitation team, which involves various health professionals, including 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 do safely. The programme worker will then tailor a programme of exercises especially for you. You will be encouraged to start slowly and gently and to increase the amount of exercise you do gradually over the week. 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 will use special equipment, such as exercise bikes, and others will include exercises you can do in a chair.

You may be asked to watch 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 can find a technique that suits you.

Want to know more?

Cardiac rehabilitation programmes in your area
British Heart Foundation: recovery

Feelings and relationships

Being diagnosed with heart failure can be a great shock. Naturally, some people will feel scared, anxious, depressed, angry, unable to enjoy things any more or to cope with everyday life. It is estimated that around one in five people with heart failure suffer from depression.

Seek help if you think 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 to discuss any worries or problems you have with your doctor or nurse if you don't feel able 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 provide you with guidance 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.

Want to know more?

British Heart Foundation: heart helpline
Blogs: heart conditions

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.

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 the legs and reduce the risk of DVT.

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

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.

Travel insurance

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

Want to know more?

British Heart Foundation: holiday and travel top tips

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. Staying in work with the right support 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 you can find a solution that suits both of you. For example, would it 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 the person with the 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 because of your heart failure, you may be able to claim disability and incapacity benefits. People over 65 who are severely disabled may qualify for a type of disability benefit called Attendance Allowance.

Help for carers

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

Want to know more?

British Heart Foundation: money issues
Carers Direct: 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 GP or hospital visits or collecting prescriptions, to 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 in which you can help is by watching for warning signs that the person's heart failure is getting worse or they are not responding to treatment. If you notice a new symptom or a worsening of current symptoms, contact their doctor. 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
swelling or pain in the abdomen
trouble sleeping, or waking up short of breath
dry, hacking cough
feeling more and more tired, or feeling tired all the time.

Want to know more?

Carers Direct

What will happen towards the end?

If their heart failure gets more severe, a person may find themselves becoming more and more immobile. The breathlessness can get worse and this can be a distressing symptom if not managed properly.

Your doctor can prescribe painkillers called opioids which, when used carefully, have been shown to ease the feeling of breathlessness. Some patients find that pain becomes more of a problem as their heart failure worsens. Opioids can also help relieve pain.

What is palliative care?

Palliative care describes the support and care of symptoms when no cure for the disease is possible, often when the person is dying. Your doctor or nurse may suggest 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 you and your family.

What decisions do I need to make?

The things that you will need to consider are:

Making a will if you haven't made one already.
An advance statement lets those close to you know about the sort of care you would like, and where you want it (e.g. home, hospital or hospice) if you are not able to decide for yourself, perhaps because you are unconscious. 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 directive). 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.
If your heart stops, do you want to be resuscitated?
If you have a defibrillator, would you want it turned off?