COPD - Derby Hospitals NHS Foundation Trust
Transcription
COPD - Derby Hospitals NHS Foundation Trust
Living with COPD A practical guide to understanding Chronic Obstructive Pulmonary Disease (COPD), treatment and lifestyle choices About this guide This guide includes information which will help you to understand your chronic respiratory condition. It will also help you to learn how to control your symptoms so that you can manage your condition better and have an improved quality of life. The information in this guide has been written by specialists in respiratory care. Your healthcare professional may help you to work through this guide so that the information in it is personal to you. The details that are filled in will not only be useful to you, but to healthcare professionals involved in your care. You should speak with your healthcare professional before you do anything different from the advice they have given you. It is not meant to replace face to face contact with your healthcare professional or any of the advice they give you. You may also choose to share this with your family and friends so that they can help you and learn to understand about your condition too. Helpful tip If you have any questions while you are using this guide speak to your healthcare professional as they will be able to help you. My information In this section there is: Your details Your medical record Useful contacts Appointments planner My details Medical details NHS number (if known): _________________________________________________ GP name: _________________________________________________ GP number: _________________________________________________ Hospital consultant name: _________________________________________________ Nurse/physiotherapist name: _________________________________________________ Respiratory team number: _________________________________________________ My medical record The health problems I have are: The date I was diagnosed was: The treatment I am having is: You can use this page to record your medical information such as other health problems and any allergies you may have. My useful contacts You can use this to record telephone numbers that will be useful to you. Name Telephone number _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ _______________________ The British Lung Foundation Helpline: 03000 030 555, Monday to Friday, 9am - 5pm www.blf.org.uk Email: helpline@blf.org.uk My appointments planner You can use this planner to record when your medical appointments are. Appointment Date Time _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ _______________________ __________ __________ About COPD In this section there is information on: What is COPD? The causes and symptoms of COPD Diagnosis Exacerbations (flare ups) and exacerbation record Self management Better breathing Chest clearance exercises Going into hospital What is COPD? Chronic Obstructive Pulmonary Disease (COPD) is a medical condition where people have difficulty breathing because of long term damage to the lungs. Pulmonary refers to the lungs and includes all the tubes that take air from the nose and mouth into your lungs. Chronic means long-lasting. It has nothing to do with how serious the disease is, it simply means that the illness is not short term. These include the windpipe (trachea), 2 main bronchi (one supplies the right lung and the other the left), lots of smaller branches (bronchioles) and finally the tiny air sacs (alveoli). Obstructive means blocking. Disease means illness and tells us that all is not well. In COPD, due to repeated exposure of harmful substances the airways can become damaged which can result in inflammation, airway narrowing and an increase in the production of mucus. The damage to the lungs in COPD is permanent and cannot be repaired. This means that airflow in and out of the lungs becomes more difficult. This is usually more obvious when breathing out. Effective diagnosis and management is important to prevent further problems and maintain lung function. COPD can be classed as mild, moderate, severe or very severe based on lung function measurements. The causes and symptoms of COPD What are the causes of COPD? Smoking is a major cause of COPD. Smokers who suffer from COPD have lungs which are more sensitive to the harmful effects of the cigarette smoke. Other factors such as what people do for a living and family history can also be causes of COPD. What are the common symptoms? Symptoms of COPD often develop over many years. You may notice that you have been unable to do as much activity as normal without getting short of breath and are troubled by more chest infections. The symptoms most commonly experienced by people with COPD are: Breathlessness This is due to a narrowing of the airways. The airways have a muscle layer that helps to keep them open but this is often damaged due to long lasting exposure to harmful substances. This results in the airways narrowing making it difficult to get the air in and out. The lining of the airways can often become inflamed, possibly due to infection or something that has irritated them. This will lead to further narrowing with the breathlessness getting worse. Sputum The airways in your lungs produce secretions to keep them moist and to remove small particles of dust that you breathe in. Some people with COPD produce too much sputum (phlegm). This is because irritation of the airways may cause mucous glands to become enlarged and become more productive. People with COPD also often tend to breathe through their mouth to try to get more air into the lungs. When they breathe this way, the nose is unable to filter and remove solid particles from the air before it reaches the lungs, causing further airway irritation. Useful information If you would like to learn more about COPD turn to the lifestyle management section to find out more. Cough The airways in your lungs have millions of tiny hairs called ‘cilia’ which waft the sputum up to the back of the throat where it is normally swallowed. Smoking damages these hairs and reduces the lung’s ability to clear sputum. Diagnosis Your GP may ask you a number of questions to find out if you have COPD. These could include: What symptoms have you got? How long have you had them? How far can you walk without getting short of breath? Do you smoke now or have you smoked in the past? How many years did you smoke for? What is/was your occupation? Have you ever had any medication that helped? Are you prone to chest infections? Your GP may send you for an x-ray of your chest. The best way to find out what is happening in your lungs is to send you for some lung function tests. This is where you blow into a machine called a spirometer. This will help the doctor to see how well your lungs are working. Using a spirometer You may also be referred to a consultant at the hospital for breathing tests if they are not available at your GP surgery. Once a correct diagnosis has been made you will then be given the correct medication and advice. Exacerbations (flare ups) When you have COPD there will be times when you have an increase or flare up of your symptoms, such as increased breathlessness, making daily activities difficult. Healthcare professionals may call these exacerbations. It is very important when you have COPD to recognise the signs and symptoms of an exacerbation and start the right medication as soon as possible. Important! Remember to inform your GP surgery if you start steroids and/or antibiotics. If you feel no better after 48 hours seek medical advice. Common symptoms during exacerbations are: Increasing shortness of breath Increasing quantities of sputum/phlegm Sputum/phlegm becoming persistently more discoloured than normal Follow your respiratory action plan when dealing with these symptoms. On the next page there is a place for you to record any exacerbations that you have. Date No No No No No No No No Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes No Yes No No No No No No No No No Rescue steroids used Rescue Name of antibiotics antibiotics used Yes Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No No Yes Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No No Supported Admission Number of at home to hospital days in by nurses hospital Recording your exacerbations can help to plan your future care. Exacerbation (flare up) record Self management Understanding and controlling your symptoms is an important part in managing COPD. Your healthcare professional will be able to give you individual advice on how to control your symptoms. If you can control your symptoms it will help you to feel more in charge of your condition. There are different ways in which you can control your symptoms, these include: Learning about your condition Knowing what your normal symptoms are and learning to recognise when they are changing Knowing what to do if your symptoms change and what works for you Knowing when to get help Not forgetting to take your medication Helpful tip Your respiratory action plan will help you to recognise when your symptoms are changing and what action you need to take. Better breathing Breathing control This section covers the general principles of breathing control, but you may be referred to a physiotherapist for help and more specialist advice. Learning about your breathing and how to have some control over it helps you to identify when a breathlessness attack is going to happen and what to do about it. Being breathless is a frightening feeling. Fear and anxiety can sometimes cause breathlessness, setting up a vicious cycle. With practise you should be able to break that cycle and work through attacks of breathlessness, returning your breathing to normal in a controlled way. The main muscle that is used in breathing is the diaphragm. This is a large, dome shaped muscle that is attached to your ribs underneath your lungs. Using the diaphragm is the most efficient and relaxing way to breathe. It usually does the majority of the work during resting breathing. In COPD the diaphragm may become less effective in the way that it works and other muscles of the upper chest with take over. These muscles require more oxygen to do the same job and so the work of breathing becomes more tiring. Breathing using the diaphragm (gentle breathing) helps you to make the most of your available lung capacity. For some people with COPD the pattern of breathing alters and the diaphragm breathing technique may need to be changed. Your physiotherapist will be able to help you with this. Instructions for breathing control 1. Settle yourself in a comfortable and relaxed position, making sure your back and shoulders are well supported 2. Place your hand on the lower part of your chest at the front 3. Breathe in slowly and gently through your nose 4. As you breathe in feel your hand move away from you (as if a balloon is inflating under your hand) 5. As you breathe out through your nose or mouth, feel your hand return to its starting position (as if the balloon is deflating) 6. You should feel a slight pause before you start your next breath in - this is called an end expiratory pause Breathlessness Controlling your breathing is an important part of managing COPD. It takes time and practise to learn how to get used to better breathing. To help with breathlessness during activity Try and pace yourself when you are doing something that makes you short of breath and practise your breathing control during rests. Try not to hold your breath when you are doing activities as this will make you breathe more quickly afterwards to make up for it. When doing everyday activities or exercise you will find it easier to breathe out on the ‘effort’ part of the movement. Don’t try to talk too quickly especially when you are talking on the telephone. Pace your speech as well as your activities. Try different sitting and standing positions to ease breathlessness. Many people find leaning forward to sit and stand, resting the forearms and relaxing the shoulders can be helpful. Chest clearance exercises These exercises will help you to clear sputum/phlegm from your chest. Alternate exercises 1 and 2 below until you have loosened the sputum. Only when the sputum is loose proceed to exercise 3. Exercise 1 With relaxed shoulders place your hand on the lower part of your chest at the front and breathe in gently through your nose As you breathe in, feel your hand move away from you. On breathing out you should feel your hand return to its resting position You should feel a slight pause before you start your next breath in Aim to do at least 6 of these breaths Exercise 2 Take a long, slow deep breath in through your nose, hold for 3 seconds, then sigh the air out slowly through your mouth Repeat 3 times Try to keep your shoulders relaxed whilst taking your deep breaths Try not to cough during these exercises Exercise 3 (huffing) Take a steady breath in With your jaw relaxed and mouth open blow warm air out quickly onto your hand (as if you are trying to steam up a mirror) No more than 2 huffs together is advised to stop you from feeling dizzy and to avoid bouts of wheezing and coughing Only cough if you have loose sputum which has not cleared with a huff (exercise 3) Inappropriate and excessive coughing can be counterproductive If your chest still feels congested restart the cycle with exercises 1 and 2 and continue until you feel that it is clear Going into hospital It is important to take all relevant information about your COPD and current medication with you whenever you go to hospital, either as an inpatient or outpatient. Taking this guide and your respiratory action plan with you will help healthcare professionals to know more about the medication you take and the care you have been receiving by different people - remembering to keep it up to date and taking it with you will help everyone involved in your care. Medication Take your usual supply of medication with you when you go into hospital as they may not routinely stock your medication. Ask staff on the wards to write down the times when you should take your medicine as part of your care plan. Always ask if you are unsure about anything to do with your medication. Benefits Depending on how long you are in hospital for may affect your benefits. Contact the Department for Work and Pensions for more information and advice on what to do about your benefits while you are in hospital. Discharge planning Plans for discharge may start as soon as you are admitted to ensure that everything is in place for when you get home. Follow up care may include visits from community nurses as well as outpatient appointments. If you have been struggling to manage at home before your admission and feel you may need more help or support, discuss your concerns with the ward staff. Non-Invasive Ventilation If you are very breathless and tired and your respiratory muscles are not working properly your hospital doctor may decide to put you on a short course of Non-Invasive Ventilation (NIV). NIV is a way of helping you to breathe using a machine attached to a tight fitting mask which you wear over your face. It is not the same as a nebuliser and is only used when you are having an exacerbation (flare up) of your chronic lung condition, which has not responded to less invasive treatments methods. Not all people will require this treatment. You may need to wear the mask as much as possible for the first 24 hours. It can be removed for short periods to allow you to eat, drink and take your medication. After the first 24 hours your doctor will give you advice on how and when to reduce the amount of time you need to wear it for, dependent on your condition and progress. Usually, people only need to stay on NIV for a few days but this does vary from person to person so please follow individual advice given by your doctor. NIV will support your breathing to give your muscles a rest. It doesn’t breathe for you but assists each breath you take helping to get oxygen and carbon dioxide levels back to normal. Helpful tip Using your respiratory action plan and learning how to manage your condition will help to reduce the chances of you having to go into hospital. Medication In this section there is information on: Medication and treatment for COPD Medication planner Medication trials Lung function results Vaccination record Medication and treatment for COPD The following pages will tell you about medications used for COPD, how they work, when to take them and how they may affect you. All medications have two names, the drug name and the brand name. These drugs are often delivered as an inhaler and there are a variety of inhaler devices for each drug. For example: Inhaler: Blue / grey Drug: Salbutamol Brand name: Ventolin Device: Accuhaler All medications come with an information leaflet and it is important to read this information. You should inform your healthcare professional what other medication you are taking. This is important as all medicines have the potential to react with one another. Also remember if you are buying non-prescription medicines or using herbal products you must inform your healthcare professional to make sure this is a safe thing to do. Always take your medicine regularly as prescribed and always remember to order a repeat prescription in plenty of time to prevent you running out of inhalers or tablets. Helpful tip Use the medication planner in this section to record what medication you take and how often you should take it. Spacer devices Many people who are using inhalers are also prescribed what is called a spacer device. What does a spacer device do? A spacer device is designed to make it easier to use inhalers, helping to deliver more medicine directly into the lungs where it is needed. What are the benefits of using a spacer device? A spacer device prevents some drug particles depositing themselves in the mouth. This helps to prevent oral thrush when taking inhaled steroids. There is no impact of cold aerosol on the back of the throat, which sometimes makes people cough. There is no need to coordinate the pressing of the inhaler with breathing in. A volumatic spacer device Important! Refer to the manufacturer’s guidelines for cleaning these spacer devices. An aerochamber device Short-acting bronchodilators What do they do? This type of inhaler helps to open up the airways of your lungs, helping you to breathe more easily. They are called short-acting because their effect wears off after approximately 4 hours. These inhalers are called: Salbutamol (Ventolin) Ipratropium (Atrovent) Terbutaline (Bricanyl) What are the side effects? The following side effects may be experienced by people using short-acting bronchodilators: Tremor Headache Nervous tension Palpitations Muscle cramps Flushing Atrovent can cause a dry mouth and can occasionally cause urine retention and constipation. Please refer to the individual drug information leaflet for the full list of side effects. Long-acting bronchodilators What do they do? These inhalers work in a similar way to the shortacting bronchodilators. They do not work quite as quickly but their effect lasts a lot longer. This is why you only need to use one either once or twice a day depending on your inhaler prescription. These inhalers are called: Salmeterol (Serevent) Formoterol (Oxis, Atimos) Tiotropium (Spiriva) What are the side effects? The following side effects may be experienced by people using long-acting bronchodilators: Skin reactions Tremor Palpitations Cramps Chest pain Local irritation Spiriva can cause a dry mouth and can occasionally cause urine retention and constipation. Please refer to the individual drug information leaflet for the full list of side effects. Important! Spiriva (Tiotropium) and Atrovent (Ipratropium) should not be taken at the same time. Please check with your doctor or nurse if you think you have been prescribed both. Steroid/antiinflammatory inhalers What do they do? Inhaled steroids are given to people who have severe COPD and have had 3 or more exacerbations (flare ups) in a year. They have been shown to reduce the frequency of exacerbations. Some people who have a diagnosis of both asthma and COPD use inhaled steroids to control their asthma. In this situation the steroid reduces inflammation and treats the symptoms. In both situations it is important that the inhaler is used daily, as prescribed to gain any benefit. What are the side effects? The following side effects may be experienced by people using steroid/antiinflammatory inhalers: Hoarseness of the voice Thrush of the mouth or throat Rash (on rare occasions) Your doctor or nurse may prescribe your inhaler in combination with a longacting bronchodilator e.g. Seretide, Symbicort or Fostair Please refer to the individual drug information leaflet for the full list of side effects. These inhalers are called: Beclomethasone diproprionate (Becotide) Fluticasone propionate (Flixotide) Budesonide (Pulmicort) Remember! Use a spacer device to administer an inhaler and rinse your mouth afterwards. Mucolytics What do they do? Mucolytics help to thin sputum. This makes it easier to clear it from your chest. They may also help to reduce exacerbations (flare ups). Mucolytics can be called either: Carbocisteine (Mucodyne) Mecysteine (Visclair) What are the side effects? Mucolytics have very few side effects, but in rare cases they may cause gastric symptoms. Rescue medication There will be times when your condition worsens due to a virus, bacterial infection, the weather or pollution. If you have a bacterial infection you will need antibiotics and steroids. If there is no infection present, a course of steroids may be prescribed to help your breathing get back to normal. Antibiotics Antibiotics will kill the bacterial infection that has affected your lungs. Remember to tell your doctor of any allergies you may have to antibiotics. Take as directed on the packet, at regular intervals and complete the whole course. If your symptoms do not improve within 48 hours then seek medical advice. What are the side effects? Stomach upsets Diarrhoea Please refer to the individual drug information leaflet for the full list of side effects. Steroids Steroid tablets will reduce both the inflammation and swelling caused by the infection. These will help you to breathe more easily. Take first thing in the morning Take with food or milk Complete the course What are the side effects? One of the side effects of long term use of steroid tablets is osteoporosis, which is a bone thinning disease. Your doctor may start you on some medication to prevent this or send you for a bone scan. Nebulisers Nebulisers are sometimes used to treat severe exacerbations (flare ups) for a short period. They are also used if you cannot use an inhaler properly for whatever reason. If you do have a nebuliser it is important to follow the instructions for cleaning, changing the filters, replacing the chamber and tubing and having it serviced on a regular basis. If you do not do so it could become a source of infection. They deliver the same types of bronchodilator drugs that your inhalers do, but in a much larger dose. Helpful tips for taking medicines Use the medication planner to help you keep track of your medication Don’t stop taking medication without speaking to your doctor or nurse first Speak with your doctor, nurse or pharmacist about any medication side effects that are worrying you Never share your medication with other people Anti-osteoporosis tablets What do they do? These drugs work directly on your bones to protect them and may reduce the risk of bone fractures. These tablets must be taken long term to get the benefit from them. They come in tablet form and are called: What are the side effects? The following side effects may be experienced by people taking antiosteoporosis tablets: Diarrhoea, flatulence or constipation Nausea, heartburn or gastric problems Skin rashes (very rare) Headaches Disodium Etridronate and Calcium (Didronel PMO) Please refer to the individual drug information leaflet for the full list of side effects. Alendronic acid (Fosamax) If you experience: Risedronate sodium (Actonel) Sore throat Bruising Fever/high temperature Stop taking the tablets immediately and seek medical advice. Bronchodilator tablets What do they do? These may be prescribed if you are still having problems with breathlessness despite being on the correct treatment. They act by opening up the airways in the lungs and reduce chest tightness and wheezing. They also help to reduce inflammation. Unfortunately they potentially have more serious side effects and require monitoring with blood tests, so they are not commonly used. These tablets are called either: Theophylline (Nuelin, Uniphyllin, SloPhyllin, Theo-dur) Aminophyllin (Phyllocontin) What are the side effects? The following side effects may be experienced by people taking bronchodilator tablets: Fast pulse Palpitations Stomach upsets Headaches Oxygen therapy In healthy lungs oxygen enters the bloodstream from the tiny air sacs (alveoli) in the lungs and carbon dioxide leaves the bloodstream in the same way. In people with COPD the lungs are damaged which may affect the exchange of oxygen and carbon dioxide in the lungs. If your COPD worsens it may be necessary to have your oxygen levels checked. Your healthcare professional can check your oxygen levels with a pulse oximeter, which is a device which shines a light through your finger. The test is pain free and only takes a few minutes. If the oxygen level in your blood is less than 92% when you are well and not exerting yourself, you may benefit from long term oxygen therapy. You will need to be referred to the Oxygen Assessment Service for tests for this. These tests will look at the oxygen and carbon dioxide levels in your blood to see if oxygen will be of benefit and to establish what is a safe level for you. If you are recommended to have long term oxygen therapy the assessment team will advise you of the amount of oxygen you require and the duration to wear it. It is important you stick to this prescription as oxygen can have side effects if not controlled. It is also important to keep it at the prescribed dose, and not be tempted to increase the flow rate yourself. Oxygen is a drug and needs to be treated like all other prescriptions. It is not a treatment, it is purely given to prevent further damage to the heart and lungs. Oxygen has been found to be of no benefit if the oxygen level is more than 92%. Smoking is not allowed near an oxygen supply as it is a fire hazard - oxygen and a naked flame will cause a fire. Speak to your healthcare professional to find out more about the Oxygen Assessment Service. Useful information Oxygen therapy does not treat breathlessness. It can make breathlessness worse. Fan therapy direct to the face can help to ease breathlessness Oxygen therapy is not a treatment as such, it is used to prevent deterioration of heart function Medication planner You can complete this record to help you to know what medication you are taking and when you need to take it. The medication I am taking is called: Short-acting bronchodilator Salbutamol Ipratropium Terbutaline Long-acting bronchodilator Salmeterol Formoterol Tiotropium Mucolytics Carbocisteine Mecysteine Steroid/anti-inflammatory inhalers Beclometasone diproprionate Fluticasone propionate Budesonide Combination therapy Symbicort Seretide I need to take this medication: The medication I am taking is called: Anti-osteoporosis tablets Disodium etridronate and calcium Alendronic acid Risedronate sodium Bronchodilator tablets Theophylline Aminophylline Other medication I need to take this medication: Date Drug used Dose Regime Duration You can use this to record any new medication. Result/comment Medication trials Date pH pCO2 pO2 HCO3 BE Long term oxygen therapy trial (LTOT) Sats 02 L / Min Date FEV1 predicted FEV1 % FVC predicted FVC % FEV1 / FVC ratio You can use this to record your lung function results. Lung Function Results O2 sats Body MRC mass dyspnoea score index Vaccination record You can use this to record when you have had your pneumonia and flu vaccinations Date Vaccination given Signature Lifestyle Management In this section there is information on: Looking after yourself Smoking Exercise Pulmonary rehabilitation Healthy diet Managing anxiety, panic and depression Setting yourself goals Goal setting planner Planning for the future Support groups Education Getting help with money Travel The weather Relationships Looking after yourself Keeping well Here are some tips to help you to keep yourself well: Act early if you feel your symptoms are getting worse - follow your respiratory action plan Protect yourself from colds Have your flu jab every year Make sure you are up to date with your pneumonia vaccination Avoid crowded places when coughs and colds are going around Avoid sudden changes in temperature Cover your mouth and nose with a scarf when you go out on cold days Stay as active as you can Eat a healthy, well balanced diet Don’t run out of medication Smoking Smoking is a common cause of chronic respiratory conditions. This is because tobacco smoke contains thousands of poisonous chemicals and toxins, and when breathed in, many of them settle in the lungs causing disease. Tar in cigarette smoke can damage the lungs by causing narrowing of the small tubes (bronchioles), and damaging the small hairs (cilia) that help protect the lungs from dirt and infection. Cigarette smoke also releases substances into your bloodstream that can damage other organs. Passive smokers breathe in the smoke that is exhaled from people who smoke. If passive smokers have lung conditions, this can increase their problems. Stopping smoking Stopping smoking can make a huge difference to your health. Even if you have a fairly advanced chronic respiratory condition, by stopping smoking you are likely to benefit and prevent further progression of the disease. Stop smoking services are available locally and provide free, confidential advice and support for people who would like to stop smoking. These are offered either face to face individually, in a group or by telephone support. Useful information To find out about your local stop smoking service speak to your healthcare professional. 75 100 0 25 50 Lung function 25 Death Disability Age (in years) 50 Regular smoker FEV1 (% of value at age 25) Stopped at 65 Stopped at 45 Never smoked 75 The benefits to your lungs if you stop smoking Exercise Maintaining a good level of fitness and exercise is extremely important to our health and wellbeing. Most people with chest problems get breathless very easily which can be frightening and can put you off trying to exercise. Unfortunately if you avoid exercising your muscles get out of condition. They then require more oxygen to work, making you more breathless than necessary. If this is not addressed, it can lead to a sedentary and socially isolated lifestyle. It is possible, however to recondition your muscles by exercising. Exercise needs to be regular and at a sufficient level to make your breathing harder and your heart rate faster. You can use your breathlessness management strategies to help control and slow your breathing down more quickly after exercising. Consistent regular exercise over a period of 4 - 6 weeks should lead to an improvement in your breathing and levels of tiredness. Exercise needs to be continued regularly to maintain its effects in the longer term. Talk to your healthcare professional if you require more advice or support and consider attending a pulmonary rehabilitation programme. Helpful tip Use the exercise planner in this section to help you to keep a record of any exercise you do. Exercise planner Writing down and recording what exercise activities you do will help you to plan when to do exercise and also help you to increase your fitness levels. Use this planner to keep track of any exercise you do. The exercise I am going to do: Example: Walk to the shops to get a paper When I am going to do it: Example: Every morning, 7 days a week Pulmonary rehabilitation Pulmonary rehabilitation is a group based programme of individualised exercise and education for people affected by chronic respiratory conditions. Pulmonary rehabilitation is an important part in the management of people with chronic respiratory conditions whose symptoms are impacting their everyday activities. The programme is delivered over a 6 week period with twice weekly supervised exercise and education sessions covering many different topics related to respiratory conditions. The aims of the programme are to: Reduce the impact of your symptoms and improve your quality of life Maximise muscle strength and endurance by providing an individualised exercise programme and ongoing exercise options. This helps to reduce breathlessness and fatigue to make day to day activities easier Teach you about your chest condition and how best to manage your symptoms Useful information To find out more about pulmonary rehabilitation speak to your healthcare professional. Healthy diet Good nutrition is important. Your body needs a varied and balanced diet to ensure it is receiving adequate nutrition. Having a balanced diet can help you fight infection, strengthen the immune system and reduce any hospital stays. Common problems associated with chronic respiratory conditions, which can have an impact on your food intake may include: Increased shortness of breath Feeling tired Reliance on oxygen Taste changes Dry mouth and bloating It is vital that you manage your diet to address these issues and to ensure that you get the most out of the food you are eating. Some people find that they have a small appetite and are losing weight, while others experience no change in their appetite and a decrease in mobility contributing to weight gain. The Body Mass Index (or BMI) is a way of seeing if your weight is right for your height. The actual calculation is your weight (in kilograms) divided by your height (in metres squared). It is not dependent on sex, age or muscle mass, but generally is considered a good indicator. Under 20kg/m² = underweight 20 - 25 kg/m² = healthy/ desirable weight 25 - 30 kg/m² = overweight 30 - 40 kg/m² = obese Over 40 kg/m² = morbidly obese (WHO, 1998) If you are underweight If you have a poor appetite and/or you are feeling full quickly: aim to eat little and often, aiming for 3 regular meals and snacks between meals daily. If you are breathless while eating: choose foods that are easier to chew as they require less effort. Sit up straight when eating to ease the pressure on the lungs. If you are a slow eater: do not feel that you have to rush, chew your food well and eat slowly. If you find that your food or drinks are going cold, you could use a plate warmer or mug insulator. If you are continuing to lose weight: aim to increase the amount of energy and protein in the diet without necessarily increasing the volume of food eaten. This is also called food fortification. High energy foods Butter and margarine Syrup Jam Oil Marmalade Fried foods Puddings Cream and cream cakes Pastry Peanut butter Crisps Mayonnaise Salad cream Biscuits Sugar Honey High protein foods Meat Fish Cheese Eggs Milk Yoghurt Beans and pulses Nuts How can I fortify my meals? Aim for 1 pint of full cream milk per day. Make fortified milk by adding 4 tablespoons of powdered milk to each pint of milk. Add butter, cream and cheese to potatoes, soups and sauces. Use mayonnaise, salad cream and butter in sandwiches. Add butter, margarine or oil to potatoes and vegetables. Top dishes with grated cheese. Add cream, custard or ice cream to puddings and fruit. If you are overweight Eat regularly: aim to have 3 meals a day - if you skip meals you are likely to eat a lot more and snack on high calorie snacks. Reduce your fat intake Choose semi skimmed or skimmed milk, low fat yoghurts and cheeses. Choose leaner types of meat. Use less oil and butter when cooking. Avoid frying. Instead steam, bake, boil and grill. Eat 5 portions of fruit and vegetables per day One portion = an apple 2 plums a handful of berries 3 tablespoons of vegetables This includes fresh, frozen, dried, canned and juiced varieties. Do not add butter, margarine or creamy sauces to cooked vegetables or use mayonnaise or salad cream on salads. Instead try a vinaigrette dressing. Portion sizes Composition of your plate should be ¼ protein foods e.g. meat, ¼ starchy carbohydrate e.g. potatoes, rice, pasta and ½ vegetables or salad. Try eating from a smaller plate. Take time over your meals and chew well. Reduce your sugar intake Reduce fizzy drinks and aim for sugar free alternatives. Use a sweetener where appropriate. Limit intake of cakes, biscuits, sweets and chocolate. Limit alcohol Caffeinated drinks in large quantities can act on the kidneys to increase fluid loss. Decaffeinated drinks can help to reduce this effect If the weather is hot or you have a fever/ infection, fluid intake should be increased by approximately 50% to 3 litres (6 pints) per day. This is equivalent to 12 mugs per day. If you suffer from heart or kidney problems, please check the advice given above with your own doctor to see that it is safe for you. Alcohol is high in calories. Aim to drink less or opt for water, fruit juice or sugar free/ slimline mixers or soft drinks. Fluid intake The most effective way to keep sputum thin and to help chest clearance is to drink plenty of fluids. The recommended daily amount for adults is 2 litres (4 pints) per day. This is equivalent to 8 standard mugs of hydrating fluid. Most drinks are hydrating fluids, however alcohol is a dehydrating fluid and will therefore need replacing with additional hydrating fluids. Managing anxiety, panic and depression What is anxiety? Anxiety is an unpleasant feeling when you feel worried, uneasy or distressed about something that may or may not be about to happen. What is panic? To panic is to be quickly overcome with a feeling of fear or worry. This is usually a consequence of anxiety. What is depression? Depression is a persistent low mood, feeling bad about yourself and feeling hopeless about the future. Causes Many things can trigger anxiety or depression such as stress, health or life issues. It is not unusual for people living with a chronic respiratory condition to suffer from these at some point. The effects of anxiety and depression can be varied. Some may result in physical symptoms such as: Chest tightness Quick shallow breathing Rapid heart rate Panic attacks Some may affect the way you feel or think such as: Sense of fear Lack of concentration Constant worrying Irritability Some common symptoms are: Feelings of hopelessness Lack of energy to take care of yourself Loss of interest in the things you used to enjoy Dealing with anxiety and/ or depression Recognising that there is a problem is the first step in dealing with it even if you are not sure what is causing the problem. Listed below are suggestions to help you: Talking - sharing your problems can help you to find the right support for you. Relaxation - planned relaxation calms anxiety and helps your body and mind to recover from stress. Exercise - helps to release natural chemicals in the brain which can lead to a feeling of wellbeing. Self management using a problem solving approach to deal with stress and worries can help you to recognise and address triggers more effectively. If you have ongoing concerns over your mood speak to your healthcare professional. To help relieve a panic/breathlessness attack 1. Find a position where you can allow your shoulders to relax e.g. leaning forwards with your arms resting on a table or your lap. 2. Become aware of your out breath - it is likely to be quite short at first. 3. You may find it helpful and beneficial to quietly say "er" or "mm" on the out breath. 4. Gradually try and lengthen the out breath by increasing the length of time you say “er” or “mm”. 5. You do not need to focus on the breath in, it will happen automatically following your breath out. 6. Once your breathing rate has slowed down enough, relax in a sitting position (preferable with your head and shoulders supported). This may take several minutes to achieve depending on the degree of your breathlessness. 7. Continue with breathing control as described in the “About COPD” section of this guide. Setting yourself goals You might have stopped doing some things as you feel you are unable to do them. Or you may want to do more but are unsure if you can. Setting yourself goals will help you to organise your time so that you can make the most out of your life and manage to do the things you would like to do. They will also help to increase your confidence as you try to achieve the goals you have set yourself. There are key stages to setting goals: 1. Decide what you would like to do 2. Decide how you are going to do it 3. Plan when you are going to do it You will also need to look at how important it is that you achieve the goal and how confident you are that you will achieve it. How do I set myself goals? The process of setting goals will allow you to choose what you actually would like to achieve. It will help to create long term aims and short term motivation. Helpful tip Use the goal setting planner in this section to help you to set and achieve goals. If you need help, speak to your healthcare professional. To help set yourself goals Speak with your healthcare professional before you start to set yourself goals. They will be able to help you to plan what is possible for you to achieve. Don’t do too much, too soon. Start off slowly and see what progress you make - this will help to increase your confidence. Change the activities that you do so that you keep it interesting. Plan to do the activities when you feel at your best, as energy levels change on a daily basis. Reward yourself when you have achieved a goal, this will help to keep you motivated. Goal setting planner Use this planner to help you to set yourself goals. What I would like to do: How important is it that you achieve this goal on a scale of 1 to 10? Circle the number below. 1 Not important 2 3 4 5 6 Very important 7 8 9 10 How am I going to do it? When am I going to do it? How often am I going to do it? How confident are you that you will be able to carry out your goal? Circle the number below. 1 Not confident 2 3 4 5 6 Very confident 7 8 9 10 Planning for the future When living with a long term condition it is common to think about the future. This may be something that you find difficult to do, but there are people who can support you with this. If you can take steps to plan for your future, it will help to bring peace of mind to both you and your family. Planning for the future may involve asking questions about what will happen if your condition gets worse and what plans you may need to have in place. These plans may include: Organising finances Writing a will Treatment and care options Planning for the future will involve you and your family making important decisions. These decisions should be made before any situations arise. This will help all the people who are involved in your care to carry out your wishes. Part of this care is to identify not only the physical needs of the patient (such as shortness of breath), but also the psychological, social and spiritual needs. It is important to tell your healthcare professional how you are feeling and how your lung condition is affecting your everyday life. One of the main symptoms of chronic lung conditions is shortness of breath, which can contribute to reduced mobility, poor appetite and tiredness. Another common problem can be depression. Some people feel anxious or irritable and unable to sleep properly at night. Your healthcare professional may be able to adjust your treatment to help improve your quality of life and may also be able to refer you to other healthcare professionals who can help. There are specialists in palliative care who can provide help to improve your symptoms along with helping you and your family to cope with your illness. Treatments offered include medication, relaxation techniques, complementary therapies, and day care, which can provide social support and ongoing reviews of your symptoms and problems by a dedicated team. Gaining a better understanding of your condition may help you to become more involved in your own treatment, decision -making and future planning. It may also help you to gain more control over your condition. Support groups People with chronic respiratory conditions and those that care for them can often feel isolated. Having a good social network is important for people with chronic respiratory conditions and support groups offer people the chance to make that happen. There are a number of support groups for people with chronic respiratory conditions across Derbyshire. Some of these groups are part of the British Lung Foundation charity and others are independent groups. These support groups offer people the chance to meet others in similar circumstances, share learning experiences and offer mutual support. Each support group is open to all people affected by lung conditions including families, friends and carers. They arrange different outings, education activities and social gatherings throughout the year. Education Education programmes offer you an opportunity to learn more about your condition, the skills you need to help manage the problems that are associated with your condition and give you the opportunity to mix with others in similar situations to you. It covers areas such as: Dealing with pain and extreme tiredness Coping with feelings of depression Problem solving Living with Long Term Conditions Programme This is a free 6 week, NHS self-management programme for people living with any long-term health condition. It aims to help you to take more control over your condition by learning new skills to manage it better. Useful information If you want to know more, contact the Living with Long Term Conditions team Telephone: 01246 515550 Email: dchs.lwltc@dchs.nhs.uk Getting help with money There are a number of benefits that are available for people with chronic respiratory conditions. You may be entitled to benefits if you: Cannot work because of your condition. Have care needs because of your condition. Are caring for someone with a condition. If you have a great deal of difficulty getting around you may be eligible for a 'blue badge' for your car. You may find it helpful to talk to someone for advice about which benefits you may be entitled to. Travel If you are planning to travel abroad, talk to your healthcare professional before booking your holiday. Travel insurance Some insurance policies do not cover pre-existing medical conditions. Most people with a chronic respiratory condition have no problems when flying, but for some people their blood oxygen levels can fall causing them to be unwell. For these people it is possible to arrange a flight assessment. It is worthwhile shopping around for travel insurance, there are specialist insurance companies that offer insurance to people with a pre-existing medical condition. If you are found to need oxygen for the flight you will need to check with the airline before booking your holiday. Some airlines can charge for this service. It is a good idea to take extra supplies of medication with you on holiday. Discuss with your healthcare professional the possibility of taking rescue medication in case your condition gets worse. Keep your medication in your hand luggage when flying to ensure you have it with you if needed. The British Lung Foundation has information on travel insurance and details of companies that may provide insurance. The weather Changes in temperature and the weather can affect people with chronic respiratory conditions, resulting in symptoms becoming worse. The best way to manage this is to follow a healthy lifestyle, keep yourself and your home warm in winter and avoid extreme changes in temperature. Outside Wear several thin layers of clothes instead of one thick layer Wear a hat, gloves and scarf to keep warm Food Plan for the winter Ensure you have an essential food supply in the house to cover you over the bad weather conditions Inside Try to keep the rooms in your house warm (21°C) Keep your bedroom windows and curtains closed Check your heating system is working correctly Immunisations Ensure you have a pneumonia vaccination and a yearly flu jab Plan for the summer Outside Stay out of the sun, especially when it is at its hottest between 11am and 3pm Try to stay in the shade as much as possible Wear light, loose fitting clothes and a hat Inside Keep the curtains drawn at home to help keep the rooms cooler At night, open windows to allow cool air into the room Fluid intake Drink plenty of fluid - at least 8 glasses a day Keeping cool Splash yourself with cold water throughout the day or take cool showers/baths Use a fan Relationships Many people with chronic respiratory conditions find that the condition affects their sex life. They also find that they are afraid to express their sexual needs to their partner for fear of triggering a bout of coughing. They may also feel guilty about not responding to their partner’s needs. To help reduce these misunderstandings it is important to discuss these feelings with your partner. Most problems come from a lack of communication with each other. There are many misunderstandings about sexual activity when you have a chronic respiratory condition. Some of these include: The only caution that needs to be taken is if you are extremely breathless at rest. If this is the case then sexual activity may make you anxious. Speaking to your healthcare professional may help. That it may be dangerous to undertake sexual activity because of being breathless Sexual activity has to be spontaneous where both partners play an active role Sexual problems experienced by patients are a result of the condition There is no reason why you should not be able to still have a loving relationship with each other. Suggestions to encourage affection Talk to your partner about your concerns and ways in which you may be able to prevent the appearance of your symptoms. Build up your tolerance to effort by walking or exercising. Plan your sexual activities for the time of the day that is best for you (usually mid or late afternoon). Wait at least 2 hours after a big meal. Never rush things. Allow your partner to play a more active role. Use your inhalers 30 - 60 minutes before sexual activity and do your chest clearance exercises to reduce wheezing and coughing. Keep your medication close at hand. Ensure the atmosphere is relaxed and get the temperature of the room just right for you. Use methods such as pursed lip breathing and diaphragmatic breathing to control shortness of breath. Try different positions which least compress your chest. P1589/1209/09.2014/VERSION3 © Copyright. Any external organisations and websites included here do not necessarily reflect the views of the Derby Hospitals NHS Foundation Trust, nor does their inclusion constitute a recommendation.