TO PROVIDE THE VERY BEST CARE FOR EACH PATIENT ON EVERY OCCASION Chronic Heart Failure An information guide
Heart Failure The aim of the leaflet This leaflet is for people who have been diagnosed with heart failure and for their families and friends. It will help you to understand the condition, the tests used to make a diagnosis and the treatments you may receive. The booklet explains: What heart failure is What can cause heart failure The common symptoms How it is diagnosed The treatment options How you can help manage your condition What is heart failure? The heart is a muscular pump that sends blood to every part of your body to provide oxygen for muscles and organs. Heart failure is the term used to describe the inability of the heart to pump sufficient blood to meet the body s needs. 2
It is commonly a chronic long term condition which can be managed effectively with medication and other therapies to maintain a good quality of life. This is called chronic heart failure. It can sometimes require urgent treatment if of new onset or where it has become unstable. This is often called acute heart failure. There are several forms of heart failure and many reasons why it may develop which are explored in this booklet. If you have been diagnosed with heart failure you will be referred to and seen by a heart failure specialist who will work within a wider multi-disciplinary team (MDT) to plan and implement any required treatments or interventions. The MDT will liaise with your GP to optimise your care and treatment. Once your condition is stable your GP will monitor your condition periodically and liaise with the heart failure specialist team, should your symptoms change. 3
Types of heart failure The heart is divided into four chambers with valves opening and closing between these chambers to enable the flow of blood in and out of the heart to the rest of the body. The type of heart failure may relate to the area of the heart that is affected and how well it is able to do its job. There are numerous terms used by specialists: Heart failure with reduced left ventricular systolic function: (HFREF) The bottom left chamber of the heart has become weakened causing less blood to be pumped around the body. Heart failure with preserved ventricular function: (HFPEF or Diastolic Dysfunction) The heart has normal pumping strength but has difficulty filling with blood due to becoming stiff. Right heart failure: The right side of the heart has become weakened and is unable to adequately pump blood to the lungs. The hearts ability to pump sufficient blood may also be affected by how well the valves are working and the presence of an irregular heart rhythm. What can cause heart failure? The most common cause of an individual developing heart failure is coronary artery disease which accounts for around two thirds of all cases with many patients having experienced a heart attack. Blood supply to the heart may be reduced or a blockage (blood clot) may occur which damages the surrounding heart muscle when less oxygen is supplied. If the heart s ability to pump then becomes impaired, heart failure may develop and symptoms arise. 4
Heart muscle may also become weakened due to: A viral illness leading to inflammation of heart muscle (Myocarditis) Harmful substances such as excess alcohol intake over an extended period Toxic substances such as recreational drug use or prescribed treatments e.g. Chemotherapy. High blood pressure (Hypertension) A faulty heart valve A heart defect present from birth (congenital) Abnormal heart rhythms (arrhythmias) Other medical conditions placing strain on the heart over time such as respiratory disease, anaemia, thyroid gland disease and diabetes. Women who have recently given birth can develop heart muscle problems which may lead to heart failure. The term Cardiomyopathy may be used where heart muscle has become weakened, thickened or stiff due to the above causes. In some people the cause of the heart muscle weakening remains unknown or idiopathic. What are the symptoms of heart failure? Breathlessness and cough: These commonly occur when fluid collects in the lungs. This congestion is called pulmonary oedema. Your breathing may be more difficult when exercising or when lying flat. Breathlessness may wake you up from sleep leading to the need to sit up or get out of bed to feel better. You may also feel breathless on general exertion as the harder you work the greater the amount of oxygen is needed to be 5
transported to your muscles, which in turn means your heart has to pump harder. Fatigue and weakness: This is a common sign of early heart failure, occurring either at rest or after minimal activity. Getting oxygen to the muscles that are performing is more difficult due to the heart not being able to pump the blood as effectively. The body also prioritises the vital organs oxygen supply over that of skeletal muscles and so the muscles may receive a reduced supply. Fluid retention (oedema): The feet, ankles, legs and abdomen may become swollen due to a build-up of excess fluid in the body s tissues due to salt and water retention. Weight gain: It is important to closely monitor your weight as this will indicate when you are retaining too much fluid. Weigh yourself every morning before getting dressed and before eating breakfast. If your weight increases by 2lbs (1kg) in one day you may be building up fluid and should consider if your breathing is affected or you notice any swelling. If you put on 5lbs (2.5kgs) over 3 days inform your heart failure nurse or doctor. Lack of appetite and nausea: Fluid may accumulate in the digestive organs leading to feelings of fullness or bloating. A well-balanced diet is important. If you suffer these symptoms try eating smaller, more frequent meals. Diagnosing heart failure: If you have shortness of breath or ankle swelling your doctor may consider a diagnosis of heart failure. They will discuss your symptoms and medical history as well as examining you. 6
Your doctor may consider other conditions with symptoms similar to heart failure and will therefore arrange several tests to identify the reason for your symptoms. These tests may include: BNP: a blood test which can detect a hormone released by the heart when it is under stress. ECG: a non-invasive recording of the hearts electrical activity. Chest x-ray: To look for congestion in the lungs and estimate the heart size Lung function test: several measurements can be taken including how much air your lungs can hold; how well they can expel air; how well oxygen is absorbed and the strength of the breathing muscles. Echocardiogram: An ultrasound scan of the heart. It can provide information on the size, shape and strength of heart muscle, as well as the valves of the heart. Cardiac MRI: An advanced scanning technique which is capable of identifying any issues with blood supply to the heart muscle and so can assist your specialist in establishing the cause of your heart failure where it is not known. Coronary angiogram: Commonly performed following a heart attack to assess the blood vessels around the heart muscle. A narrow catheter is passed into the blood vessels via a small incision in the wrist or groin. A dye is administered and images taken via x-ray. Any identified narrowing may be opened through balloon and stenting to restore blood flow. Myocardial perfusion scan (MPS): A non-invasive imaging test that shows how well your heart is being supplied with blood. Substances containing a small amount of radioactivity (Tracers) are used to highlight different areas of the body being scanned such as heart muscle (myocardium). Routine blood tests will also be performed to monitor kidney function in response to treatment and also identify potentially treatable co-morbidities such as anaemia. 7
Medicines used to treat heart failure Heart failure is a serious condition that needs treatment. All people with heart failure will benefit from medication. The medicines you will be offered will depend on the type of heart failure you have, its cause and your situation. Your doctor or heart failure specialist nurse will discuss the treatment options with you, including their benefits and information about possible side effects. It often takes a little time to find the right combination of medications, doses and their timings to suit the individual. It is important to understand what you are taking and why. You may need to take several medicines and at different times which may be confusing. If you are unsure speak to your doctor, nurse or pharmacist who will help you to organise the timings to make them easier to take. Be sure to bring a list of your current medications to each clinic visit. 8
The following table lists the most commonly prescribed medicines depending on the type of heart failure you have been diagnosed with: 9
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Non-medical treatments for heart failure In some circumstances other treatments or therapies beyond medicines may be considered by your doctor or specialist if they are considered to improve your symptoms and/or quality of life. Surgery It is not common for heart failure to be treated with surgery. Some patients may benefit where surgery can correct a condition that has led to heart failure symptoms. Valve replacement Heart failure is sometimes the result of damaged heart valves. These valves regulate the flow of blood through the hearts chambers. Surgery to repair or replace a faulty valve may relieve symptoms by improving the blood flow through the heart. 11
Percutaneous coronary angioplasty (PTCA) / Coronary artery bypass surgery (CABG) Heart Failure symptoms may be improved by increasing blood supply to the heart muscle in those individuals with significant coronary artery disease. Bypass surgery and angioplasty can help to improve the blood supply to heart muscle. Device therapy Some individuals with heart failure may benefit from an advanced pacemaker device. This is called Cardiac resynchronisation therapy (CRT). If your symptoms are severe it may be caused by the lower chambers of the heart beating out of time to each other. If so, a CRT-Pacemaker or CRT-Defibrillator can re-coordinate the heart muscle and improve its contractions. This will be discussed with you if considered of benefit by your doctor or heart failure specialist nurse. Heart Transplant In some circumstances an individual may be referred on to a transplant specialist unit for assessment. Your doctor or heart failure specialist nurse will discuss this with you if it is relevant to your situation and condition. 12
Lifestyle measures Beyond medicines and procedures there are actions you can take to reduce your symptoms, slow disease progression and improve your quality of life. Diet It is important to eat a balanced diet. Aim for 5 pieces of fruit/ vegetables per day and limit your intake of saturated fats. Be aware of portion sizes. More guidance is available at the following link: www.nhs.uk/livewell/5aday/pages/portionsizes.aspx Avoid adding salt. Excess salt (Sodium) may worsen your symptoms as it can lead to fluid retention (oedema). Try using alternatives: herbs, spices, pepper, mustard or Lemon. Lo-Salt substitutes are not recommended as they still contain salt and are higher in potassium. The following foods are usually high in Sodium so it is important to try and cut back on such: 13
Try to eat more fresh fruit and vegetables instead of canned foods. Look for low salt labels on cans and packaging. Watch your weight If you are overweight your heart has to work harder. You may find that you become breathless on minimal exertion. Eating healthy will help you to feel better, lose weight and reduce the strain on your heart. Reducing your intake of saturated fat and cholesterol is a step in the right direction. Reduce intake of: Whole milk, cream, milk, butter, egg yolks, cheese, cakes and pies, crisps and biscuits, fatty red meats, chips, roast potatoes and other fried foods Increase intake of: semi-skimmed/skimmed ice cream, milk, low fat frozen yoghurt, low fat spread, low fat cheeses, fresh fruit and vegetables, lean cut red meat, fresh fish, chicken, turkey, wholemeal bread, boiled potatoes, pasta, and rice. Alcohol Drinking too much alcohol may damage your heart muscle. It reduces the heart s ability to contract and so may worsen your condition. Current guidelines are that you should not drink more than 2 units per day. 1 unit = small glass of wine or ½ pint Lager/Beer, Cider, one 25ml measure of spirit. 14
Smoking If you smoke, stopping smoking is the single most important thing you can do to live longer. Smoking can deprive the heart of oxygen, make the heart beast faster and raise blood pressure for a short time after each cigarette. Stopping smoking will reduce this unnecessary burden and help to improve symptoms. Contact details for local stop smoking support is listed at the back of this booklet. Alternatively visit: www.nhs.co.uk/smokefree www.quit.org.uk Immunise Flu and Pneumonia can increase the risk of complications for people with heart failure. Vaccination is recommended for any individual with a serious medical condition. Your GP should offer you the Flu vaccine on a yearly basis and a once-only immunisation against pneumonia. Contact them if you have concerns about the vaccine or if you have not been offered it. Exercise Moderate exercise can be beneficial to your heart. It can improve energy, stamina and fitness. This may help improve your symptoms and your ability to cope with them. It may help regulate your blood pressure, improve circulation, promote weight loss and lower cholesterol levels. Structured exercise classes may be of benefit to your condition and will be discussed with by your heart failure specialist nurse if appropriate. You will need to find a balance between exercise and rest. Rest and relaxation are also important, particularly if you are suffering from tiredness or disturbed sleep. 15
Watch your fluid intake Fluid management is an important part of managing heart failure and you may be prescribed diuretics (water tablets) to remove excess water and sodium. Your doctor or heart failure specialist nurse will advise you if it is necessary to restrict your fluid intake. Water tablets may make you feel thirsty. To ensure that you do not drink too much fluid it is important to monitor your fluid intake. You should drink no more than 2 ½ - 3 ½ pints per day (1 ½ -2 litres). This includes your daily intake of tea, coffee, water, juice, carbonated drinks. You may benefit from tallying up your daily intake by finding out how much water your mug or glass holds. Some people find it helps to use a 2 litre bottle, stored in the fridge, to keep track of their intake. If you are concerned about a dry mouth try sucking a boiled sweet, or using chopped fruit, ice cubes or chewing gum. Sex and heart failure Sexual health is an important part of an individual s overall physical and emotional well-being. Most people with heart failure can continue sexual relations once symptoms are under control. Follow these simple guidelines: Avoid sex immediately after eating a heavy meal Choose a time when you are rested and relaxed, in a peaceful and familiar setting If you start to feel tired or breathless during intercourse, stop and rest for a short time If your condition is severe and you can t tolerate exercise, find less demanding ways to express love and affection. 16
Feelings of stress, anxiety and depression are common following a diagnosis of heart failure and may cause a lack of interest. If you suffer depression contact your doctor for help. Occasionally some men may suffer erectile dysfunction. There are a range of treatment options available and you should contact your doctor for help. Contraception is recommended for ladies of childbearing age, pregnancy may lead to a deterioration in your condition. Driving Most people with a heart condition will be able to drive but it will depend on the type of heart condition it is. With heart failure specifically you don t need to tell the DVLA if you have a car or motorcycle licence, but you must inform them if you drive for a living and have a licence to drive a bus, coach or lorry. Standards for drivers with heart conditions are published by the DVLA and can be accessed via: https://www.gov.uk/government/publications/inf1884-car-ormotorcycle-drivers-with-heart-conditions or ring: 0300 790 6806 You should refrain from driving and seek advice from your doctor if you have been experiencing dizziness, fainting of blackouts. If you are unable to drive you may be eligible to apply for a disabled persons bus pass. You should contact your local council for this. If you carry a HGV or PCV licence the DVLA may ask your specialist or hospital to carry out various tests to help the DVLA to decide if you may still drive. 17
Car insurance Whatever type of licence you hold, you should inform your insurance company of any heart condition you have been diagnosed with and any treatments you have or are requiring. If you don t your insurance may not be valid. Travel Most people with a heart condition are able to go on holiday, including heart failure. Think about the following: Staying in accommodation that s easy to reach & close to amenities. Keep an up-to-date list of your medications in your purse or wallet. If you have a pacemaker or defibrillator, ensure you have your device card with you. You may also wish to obtain a letter from your Doctor explaining your condition, medicines & allergies. It is a good idea to take enough medication for your holiday plus two extra days in case of flight delays. Avoid high altitude destinations where the oxygen is lower in the air. This may increase breathlessness or cause angina. Destinations at altitude (>1500Metres) are generally not advised or where the temperature and/or humidity is excessive. Flying If your heart failure is controlled and stable you should have no difficulties with mild reductions in oxygen levels in an aeroplane, provided you symptoms are stable before you travel. Seek advice before travelling if your symptoms have changed. Reduce the risk of DVT: Stay active when on a flight, regularly changing your position and walking up and down the aisle when able to do so. 18
Keep well hydrated and avoid alcohol and caffeine during the flight. Travel insurance Make sure you have the right travel insurance to cover your condition(s). The British heart foundation can supply a list of favourable insurance companies: https://www.bhf.org.uk/informationsupport/support/practicalsupport/travel-insurance TOP TIPS TO REMEMBER: THE DO S AND DON TS: Do follow your doctor and heart failure specialist nurse s recommendations Do start exercising slowly and gradually build up your activity Do try to have a regular routine so exercise becomes a part of your lifestyle Do involve your friends and family such as walk in the park at the weekend Do monitor your weight. Do increase the proportion of healthy food options in your day-to-day diet. Don t worry if you have a period of inactivity. Don t exercise if you are unwell or experiencing chest pain, increased breathlessness, dizziness or palpitations. Don t engage in static activity e.g. pushing cars, moving heavy furniture or lifting weights above your head. Don t immediately exercise after meals (allow 1½ - 2 hours) or if the weather is very hot or humid. Do contact your doctor or heart failure specialist nurse if you are concerned about any changes in your condition. 19
When to call for help or contact your specialist: Some symptoms need prompt reporting to your doctor or heart failure specialist nurse. You can reduce the chances of being admitted to hospital by being aware of the following earning signs: Sudden weight gain: 3-5lbs (1-2.5Kgs) over one to three days Increased breathing difficulties especially at night and not related to exercise Increased leg swelling Increases swelling in abdomen or a feeling of fullness A frequent dry, hacking cough Any side effects from your medications You should call an ambulance if: You have severe breathlessness at rest You are experiencing angina which is not relieved by GTN spray If you are unsure as to what to do call you can contact an NHS advisor by ringing 111 (24 hours a day) who will give you further advice. 20
Weight Weight Diary Weight Useful telephone numbers Heart failure specialist nurses Fairfield General Hospital 0161-778-2687 0161-778-2217 North Manchester General Hospital 0161-922-3923 0161-720-4893 0161-720-2673 Royal Oldham Hospital 0161-627-8059 0161-627-8640 0161-778-5412 Rochdale Infirmary 0161-778-2450 0161-778-2451 Smoking cessation Bury Useful 0845 telephone 2239001 numbers North Heart Manchester failure specialist 0161-205-5998 nurses Oldham 0161-621-5937 Rochdale Fairfield General 0161-655-1581 Hospital 0161-778-2687 British 0161-778-2217 Heart Foundation 0845 0 70 80 70 www.bhf.org.uk North Manchester General Hospital 0161-922-3923 0161-720-4893 Cardiomyopathy Association www.cardiomyopathy.org Practical information on heart failure for patients and carers www.heartfailurematters.org DVLA 0870 240 0009 www.dvla.gov.uk Citizens Advice Bureau Advice line 0845 120 3703 www.citizensadvice.org.uk Direct Government Portal to public service information from the UK government, including directories, online services, news and information of relevance to specific groups. www.direct.gov.uk/disability www.direct.gov.uk/carers For Cardiomyopathy further information Association on the references used in www.cardiomyopathy.org this document please visit www.pat.nhs.uk/health/information Practical information on heart failure for patients and carers www.heartfailurematters.org 21DVLA 0870 240 0009 www.dvla.gov.uk 11
Useful contacts British Heart Foundation - www.bhf.org.uk BHF Heart Helpline: 0300 330 3311 Cardiomyopathy Association - www.cardiomyopathy.org Pumping Marvellous support group - https:// pumpingmarvellous.org/ Practical information on heart failure for patients and carers: www.heartfailurematters.org DVLA - drivers medical enquiries: online via direct.gov or telephone: 0300 790 6806 Citizens Advice Bureau - Advice line telephone: 0845 120 3703 www.citizensadvice.org.uk Direct Government Portal to public service information from the UK government, including directories, online services, news and information of relevance to specific groups: www.direct.gov.uk/disability www.direct.gov.uk/carers 22
Heart Failure Specialist nurses: Fairfield General Hospital: 0161 778 2450 North Manchester General Hospital: 0161 720 4893, 0161 720 2673 Royal Oldham Hospital: 0161 627 8059, 0161 627 8640, 0161 778 5224 Rochdale Infirmary: 0161 778 2450 Smoking cessation: Bury - 0845 223 9001 North Manchester http://www.nhs.uk/smokefree Oldham - Positive Steps 0800 288 9008 Rochdale - 01706 751 190 23
If English is not your frst language and you need help, please contact the Ethnic Health Team on 0161 627 8770 Jeżeli angielski nie jest twoim pierwszym językiem i potrzebujesz pomocy proszę skontaktować się z załogą Ethnic Health pod numerem telefonu 0161 627 8770 For general enquiries please contact the Patient Advice and Liaison Service (PALS) on 0161 604 5897 For enquiries regarding clinic appointments, clinical care and treatment please contact 0161 624 0420 and the Switchboard Operator will put you through to the correct department / service Date of publication: December 2008 Date of review: February 2019 Date of next review: February 2021 Ref: PI_M_511 The Pennine Acute Hospitals NHS Trust Wood pulp sourced from sustainable forests www.pat.nhs.uk