Managing heart failure

Patient Information Leaflet

• This leaflet explains what you can do to manage your heart failure and help you feel as well as possible.

Your heart Nurse:
Name:
Telephone No:
Email:

• If you are unable to contact your Nurse directly, please leave a message on their voicemail and your call will be returned as soon as possible.

Overview

• The term ‘heart failure’ may sound alarming, but it simply means that the muscular pump of the heart is not working as well as it should.
• This may cause breathlessness and tiredness.
• It can also cause a build-up of fluid in the body, especially in the ankles or lungs.
• Heart failure is a common condition.
• There have been many recent advances in how we understand and treat it.
• Heart failure can be treated.
• How long you live (called your ‘lifespan’) depends on many things.
• These include your lifestyle, the cause of your heart failure, taking your medicines, and your age.

How you can help yourself

• There are several things that you can do to help remain well.
• These are covered in more detail below and include:
  • Taking your medication as prescribed
  • Monitoring your symptoms for signs of change
  • Being careful about the amount you drink
  • Making a few simple lifestyle changes.

Medication

• There are several medicines available to treat heart failure.
• Your heart Doctor will decide on the most suitable treatment for you and may give you one or more of these different types of medicines:

• Some medicines are designed to help your symptoms and will make you feel better.
• With others, you may not notice any difference, but they have been shown to improve the strength of the heart muscle over time.
• Your Nurse or Doctor will gradually introduce new medicines as they cannot be all introduced at once.
• If you are admitted to hospital (inpatient), we will start the highest level of medicine you can safely tolerate before you go home.
• If you are treated as an outpatient, you may need several clinic visits to start all the recommended medicines.
• As part of the changes to your medicines, regular blood tests will be needed alongside monitoring of your heart rate and blood pressure.
• Make sure you always have enough medicine.
• Keep a list of your medicines and carry it with you, bringing it to all your clinic appointments.
• You will usually need to take your medicines for life, unless your nurse or doctor tells you to stop or change them.

What to do with your medicines when you are unwell

• If you are unwell with any of the following:

  • Fevers, sweats and shaking, vomiting or diarrhoea (unless only minor) then consider temporarily stopping these medicines:
  • ACE inhibitors, ARBs, MRAs, ARNI, SGLT2 inhibitors

• These medicines should be stopped.

• They can make you dehydrated and may cause more serious problems or side effects.

• Please speak to your heart Nurse if you are unsure.

Monitoring symptoms

• You may feel well for long periods of time. However, your symptoms may come back at other times.
• By learning to recognise signs of change, you can get help earlier.
• Small changes to your medicines can help prevent serious problems. They can also help you stay well.
• One symptom of heart failure is holding on to extra fluid (fluid retention).
• You can check for early signs by:
  • Weighing yourself every day
  • Checking for signs of swelling in your ankles
  • Noticing if you become more breathless.

Daily weighing

• One of the ways of checking for early signs of fluid retention is to weigh yourself every day.
• If you gain weight over several days, this may be a sign that you are building up too much fluid.
• To check if this is happening:
  • Weigh yourself every morning, after going to the toilet but before breakfast and before dressing.
  • Use the same scales and weigh yourself in the same way every day.
  • You may find it helpful to record your weight in a diary.
  • If you find you are consistently gaining or losing weight, you should contact your heart Nurse.
  • Everyone’s weight varies a little from day to day, but if you gain or lose 3kg within a week, call your heart Nurse.

Swelling

• Another sign that you may be retaining too much fluid is if your ankles are more swollen than usual.
• You may notice that:
  • The skin around your ankles and feet looks more stretched and shinier than usual.
  • When you press on the skin around your ankles, the indentation remains.
  • Your shoes feel tight.

Breathlessness

• Increased breathlessness may be a sign that fluid is starting to build up in your lungs.
• If you become more short of breath than usual when doing your normal activities or if you find you are waking at night due to breathlessness, contact your heart Nurse.

Fluid intake

• People with heart failure need to take a little extra care with the amount of fluid they drink.
• You need to drink enough to allow your kidneys to work properly, but not so much that you retain excess fluid.
• To help you do this, drink 1.5 to 2 litres (or 2.5 to 3.5 pints) of fluid a day only.
• This is about 6 to 10 average-size mugs.
• Include all types of fluid intake over the course of the day.
• On hot days, or if you are very active and perspiring a lot, you can drink 1 to 2 extra cups of fluid.
• You may find it useful to rinse your mouth out with cold water or suck ice occasionally if you have reached your daily fluid limit.
• Avoiding salty and sugary foods will help to prevent you getting too thirsty.
• Diuretics (“water tablets”) are designed to prevent you retaining too much fluid by making you pass more urine.
• You will soon learn how often you usually pass urine.

Lifestyle issues

• Some other changes can also help you to control your symptoms and improve your quality of life.

Keeping active

• Keeping physically active will improve your circulation, strengthen your heart muscle and make you feel and sleep better.
• Try to make sure that you do some physical activity every day.
• Your cardiac rehabilitation Nurse can discuss activities that most suit you.
• Activities can include walking, gardening, bowling, swimming, golfing or any other physical activity you enjoy.
• Build up your activity gradually, doing a little more each day.
• Try to avoid sudden hard exercise.
• If you cannot move around easily, you can do exercises while sitting in a chair or lying in bed.
• Rest is also important, so remember to include a quiet period every day – some people find a short nap helpful.
• If you have been very active on one day, it is natural for you to feel more tired and to need more rest the next day.

Salt reduction

• Salt can make your body hold on to extra fluid. It can also make you feel thirstier.
• Eating less salt can help prevent your body from storing too much fluid.
• To reduce your salt intake:
• Avoid foods with a high salt content.
• These include salted crisps and nuts, smoked meats and fish, bacon, ham and sausages. Remember that all processed foods have some added salt.
• Do not add salt to your food when cooking or at the table. Add herbs and spices as alternatives to salt.
• Avoid salt that is termed “low salt” as it contains other minerals that can be harmful in large doses to people with heart failure.

Smoking

• If you smoke, stopping now is very important for your health.
• If you continue to smoke, you may make your condition worse.
• We can refer you for support, or you can ask your GP.
• You can also seek support via the Smokefree National Helpline on 0300 123 1044 or by downloading the NHS Quit Smoking app, which you can find in the website: https://www.nhs.uk/better-health/quit-smoking/

Weight reduction

• If you are overweight, your heart must work harder.
• It is important to lose weight slowly and steadily.
• Aim for a weight loss of no more than 1 kg (2.2 lbs) per week.
• Any sudden unexpected weight loss should be discussed with your heart Nurse (see section about daily weighing).

Alcohol intake

• You are advised to drink no more than 1 to 2 units of alcohol a day but with some alcohol-free days.
• This should not be saved up for one or two evenings a week.
• One unit of alcohol is equal to half a pint of normal-strength lager or one pub measure of spirits or one small glass of wine.
• Remember that alcohol forms part of your daily fluid intake.
• If you have been told that alcohol has caused your heart failure, then you should not drink any alcohol.

Vaccinations

• People with heart failure are more likely to get chest infections.
• Ask your GP to arrange the following vaccinations:
  • Have a flu vaccine every year. This can help protect you from severe colds and flu.
  • Have the pneumococcal (pneumonia) vaccine as recommended.
  • Covid-19 vaccination as recommended.
• Try to keep up to date with all recommended vaccinations and avoid contact with people who are unwell with coughs and colds.

Summary

• There are many things you can do to keep you feeling as well as possible.

• The purpose of this booklet is to act as a reminder of what you can do and when you may need to contact your heart Nurse or Doctor.

• Everyday remember to:

  • Take your medication
  • Weigh yourself
  • Check for signs of swelling.

• If this leaflet has raised further questions for you, your heart Nurse will be happy to discuss them with you.

Useful Resources

• British Heart Foundation: https://www.bhf.org.uk/
• British Society for Heart Failure: https://www.bsh.org.uk/patient-information
• Pumping Marvellous: https://pumpingmarvellous.org

• Based on an original document authored by Suzanna Hardman.
• Updated by Phillipa Vassell-Wright and Chee Y. Loong

Contact our service

• Please contact your heart Nurse, whose details appear at the top of this leaflet.