A Patient's Guide to Understanding wbr Chronic Obstructive Pulmonary

A Patient’s Guide to Understanding Chronic Obstructive Pulmonary Disease “ACCESSING LIFE” Contents: • What Is This Booklet About? • What is Chronic Obstructive Pulmonary Disease (COPD)? • What are the Signs and Symptoms of COPD? • What can be done for COPD? • When Should I Get Medical Help? • How Do I Talk to My Doctor? • How Do I Get the Most Out of Life? • Glossary • Acknowledgments and Resources 3 4 8 11 18 19 22 32 33 2 What Is This Booklet About? The information in this booklet is meant to be a resource for people with chronic obstructive pulmonary disease (COPD) and their family and friends. The following sections were designed to provide specific information about COPD, including the causes, symptoms, and treatments available. This booklet will also offer people with COPD information about skills in maintaining and improving their own well-being. It is intended to help those with COPD gain greater independence and confidence in dealing with the physical and emotional challenges of a long-term illness. This information is not a substitute for the advice a doctor or pulmonologist (lung doctor) may provide based on his or her knowledge of a person’s specific condition. 3 What is Chronic Obstructive Pulmonary Disease? Chronic obstructive pulmonary disease (COPD) is a lung disease involving damaged lungs, making it hard to breathe. Emphysema is one of the most common forms of COPD. When someone has emphysema, the lung’s tiny air sacs become damaged and then destroyed. Shortness of breath is the major symptom of emphysema. At first, this difficulty in breathing may occur only with heavy exercise. Later it happens with light exercise and, still later, even when walking or engaging in other everyday activities. Chronic bronchitis is another common form of COPD. Chronic bronchitis causes the lungs’ airways to become swollen and inflamed. The mucus produced by these inflamed airways makes breathing even more difficult. A constant, mild cough is one of the most common symptoms of chronic bronchitis. COPD often develops slowly, and it may be many years before symptoms like feeling short of breath become noticeable. Most of the time, COPD is diagnosed in middle-aged or older people. Currently, there is no cure for COPD. The damage to airways and lungs cannot be reversed, but there are things you can do to feel better and slow the damage, maximizing your quality of life. COPD Basics In this section you'll find information about COPD, its symptoms, how it is diagnosed, and treatment options. How the Lungs Work The lungs provide a very large surface area (the size of a football field) for the exchange of oxygen and carbon dioxide between the body and the environment. A slice of normal lung looks like a pink sponge filled with tiny bubbles or holes. These bubbles, surrounded by a fine network of tiny blood vessels, give the lungs a large surface to exchange oxygen (into the blood where it is carried throughout the body) and carbon dioxide (out of the blood). This process is called gas exchange. Healthy lungs do this very well. 4 How Does Normal Breathing Occur? You breathe in air through your nose and mouth. The air travels down through your windpipe (trachea), then through large and small tubes in your lungs called bronchial tubes. The larger tubes are bronchi, and the smaller tubes are bronchioles. Sometimes the word airways is used to refer to the various tubes or passages that air must travel through from the nose and mouth into the lungs. The airways in your lungs look something like an upside-down tree with many branches. At the ends of the small bronchial tubes, are groups of tiny air sacs called alveoli. The air sacs have very thin walls, and small blood vessels called capillaries run in the walls. Oxygen passes from the air sacs into the blood in these small blood vessels. At the same time, carbon dioxide passes from the blood into the air sacs. Carbon dioxide, a normal byproduct of the body's metabolism, must be removed. The following illustration shows in more detail how normal breathing occurs. 5 What is Breathing Like With COPD? In COPD, the airways and air sacs lose their shape and become floppy. While air can go in the lungs, it has difficulty going out and, therefore, more air stays in the lungs, causing them to expand. These things occur because • The airways and air sacs lose their elasticity (like an old rubber band). • The walls between many of the air sacs are destroyed. • The walls of the airways become thick and inflamed (swollen). • Cells in the airways make more mucus (sputum) than usual, which tends to clog the airways. In the emphysema type of COPD, the walls between many of the air sacs are destroyed, leading to a few large air sacs instead of many tiny ones. As a result, the lung looks like a sponge with many large bubbles or holes in it, instead of a sponge with very tiny holes. The large air sacs have less surface area for the exchange of oxygen and carbon dioxide than healthy air sacs. Poor exchange of oxygen and carbon dioxide causes shortness of breath. In chronic bronchitis, the airways have become inflamed and thickened, and there is an increase in the number and size of mucus-producing cells. This results in excessive mucus production, which, in turn, contributes to cough and difficulty getting air in and out of the lungs. Most people with COPD have both chronic bronchitis and emphysema. 6 What Causes COPD? COPD develops because of one or more of these factors: • Cigarette smoking (80% to 90% of COPD is due to smoking). • Inhaling large amounts of irritating fumes or dust at work or at home. • In some cases, air pollution or second-hand smoke. The lungs and airways are highly sensitive to irritants in the environment. This is especially true for persons with COPD. Irritants can cause the airways to become inflamed and narrowed and destroy the elastic fibers that allow the lungs to stretch and then return to their resting shape. This makes breathing air in and out of the lungs more difficult. Other conditions that can make COPD worse are frequent colds or infections in the nose, sinus, throat, or chest. Emphysema can also be hereditary. In some families this might be due to a lack of normal lung "defenses" that fight damage within the lung. It may also be because certain habits are passed along to other family members. For example, if parents smoke, there is a good chance that their children will smoke. Since smoking is the main cause of COPD, persons with family members who smoke are at greater risk of getting these diseases. 7 What are the Signs and Symptoms of COPD? The signs and symptoms of COPD include: • Cough • Excess mucus production • Shortness of breath (dyspnea), especially with exercise • Wheezing (a whistling or squeaky sound when you breathe) • Chest tightness A cough that doesn't go away and coughing up lots of mucus are common signs of COPD. These often occur years before the flow of air is reduced. However, not everyone with a cough and excess mucus production goes on to develop COPD, and not everyone with COPD has a cough. Many people with COPD also experience fatigue – a loss of energy, and tiredness, either while at rest or following only a small amount of activity. The tiredness can be quite overwhelming, making it difficult or impossible to carry normally. The tiredness is due, at least in part, to reduced oxygen flow to the exercising muscles and may be a symptom of COPD. Other symptoms of COPD include frequent respiratory infections, weight loss, and loss of appetite. The severity of the symptoms depends on how much of the lungs has been destroyed. If someone continues to smoke, the lung destruction is faster than if he or she stops smoking. 8 How is COPD Diagnosed? A medical history, physical exam, and breathing tests are the most important tests to determine whether you have COPD. Your doctor will examine you and listen to your lungs. Your doctor will also ask you questions about your family and medical history and what lung irritants you may have been around for long periods of time. You will probably need to have some further tests done. Your primary care doctor may recommend that you see a lung specialist, called a pulmonologist. Breathing Tests Your doctor will use a breathing test, called spirometry, to confirm a diagnosis of COPD. Spirometry is the most sensitive and commonly used test of lung functions. It can detect COPD long before you have significant symptoms. Based on this test, your doctor can determine if you have COPD and how severe it is. The test is easy and painless and shows how well your lungs work. You breathe hard into a large hose connected to a machine called a spirometer. When you breathe out, the spirometer measures how much air your lungs can hold and how fast you can blow air out of your lungs after taking a deep breath. Doctors classify the severity of COPD as: Breathing test shows mild airflow limitation. Signs may include a chronic cough and sputum production. Breathing test shows a worsening airflow limitation. Usually the signs have increased. Shortness of breath usually develops when working hard, walking fast, or doing other brisk activities. Breathing test shows severe airflow limitation. A person is short of breath after just a little activity. In very severe COPD, complications like respiratory failure or signs of heart failure may develop. In very severe COPD, complications like respiratory failure or signs of heart failure may develop. Mild COPD At this stage, you may not be aware that airflow in your lungs is reduced. Moderate COPD At this stage, a person usually seeks medical attention. Severe COPD At this stage, the quality of life is greatly impaired and the worsening symptoms may be life threatening. Very Severe COPD At this stage, the quality of life is greatly impaired and the worsening symptoms may be life threatening. 9 Your doctor may also recommend tests to rule out other causes of your signs and symptoms. These tests include: Chest x-ray - A chest x-ray is a picture of your lungs. A chest x-ray may be done to see if another disease, like heart failure or lung cancer, may be causing your symptoms. CT scan - A computed tomography (CT) scan enables your doctor to see organs in the chest in two-dimensional "slices" of x-ray pictures. Doctors can spot emphysema much sooner on a CT scan than on a standard x-ray. This test is not routinely done unless your doctor sees something suspicious on your chest x-ray. Sputum test - If you have a respiratory infection, your doctor may ask you to undergo a sputum (or mucus) test. You will be asked to provide a sample of sputum, which will go to a laboratory. The sputum will be examined for signs suggesting inflammation or infection, which can mimic and/or complicate your COPD. Arterial blood gas - This is a blood test that determines the oxygen level in your blood. It is measured in people with severe COPD to see if oxygen treatment is recommended. Exercise study – This is a test that measures your oxygen level during exercise (during a six-minute walk). The distance you walk will also be assessed. 10 What Can Be Done for COPD? Quitting smoking is the single most important thing you can do to reduce your risk of developing COPD and slow the progression of the disease. Your doctor will also recommend treatments that help relieve your symptoms and help you breathe easier. Although there is no “cure” for COPD, there are treatments available to address symptoms. The goals of COPD treatment are to: Relieve your symptoms with minimal or no side-effects of treatment. Slow the progress of the disease. Improve exercise tolerance (your ability to stay active). Prevent and treat complications and sudden onset of problems. Improve your overall health. The treatment for COPD is different for each person. Treatment is based on whether your symptoms are mild, moderate, severe or very severe. Advances in treatment mean that the outlook for many people with COPD has improved substantially in recent years. Medicines and pulmonary rehabilitation (rehab) are often used to help relieve symptoms and help you breathe more easily and stay active. Oxygen therapy can help patients with COPD who have a hard time getting enough oxygen. Some surgeries (such as lung volume reduction or transplantation may be helpful for some persons with COPD (see page 15). 11 Medicines to Treat COPD Your doctor may prescribe medications to control the symptoms of COPD. Most people with COPD take medications on a regular basis to decrease breathing difficulty. In addition, some medications are used only on an as needed basis to decrease shortness of breath. For many, a combination of medications is prescribed. The important thing to remember is that there is no "standard" drug regimen. Your medications must be individualized based on your symptoms and needs. Monitoring your COPD and working with your healthcare provider on an on-going basis is the best way to ensure that your medications are right for you. The following medications are generally prescribed for people with COPD. Most medications fall into one of these groups: • Bronchodilators – Short- or long-acting medications, often taken by inhaler, that help open airways in the lungs. • Anti-inflammatories - Medications taken by inhaler or in pill form to offset inflammation in the air passages and lungs. • Antibiotics - Can be helpful for fighting bacterial infections that make symptoms of COPD worse. • Flu shot and pneumonia vaccine - Can also be helpful for preventing viruses that make symptoms of COPD worse. Bronchodilators Bronchodilators help open the airways in the lungs by relaxing the muscles around the airways. Most bronchodilator medicines are inhaled, so they go directly into the lungs, where they are needed. There are many kinds of inhalers, and it is important to know how to use your inhaler correctly. You may ask your doctor or nurse to demonstrate how to use your inhalers, and/or you may request educational materials to take home with you. 12 Bronchodilators can be either short-acting or long-acting. • Short-acting bronchodilators work quickly (within 5-10 minutes) to relieve shortness of breath and last about 4 to 6 hours. They are sometimes described as "rescue" or "quick-reliever" medications. Your doctor may prescribe a short-acting brochodilator to use regularly or as needed to relieve shortness of breath. You should always carry your “rescue” medicine in your pocket. • Long-acting bronchodilators’ effects last for a long time (about 12 hours). Therefore, these medicines should not be used for acute attacks of breathlessness or in an emergency. Long-acting bronchodilators are used regularly, usually twice a day, to open the airways and keep them open. Some people may need to use a long-acting bronchodilator and a shortacting bronchodilator. Anti-inflammatories Anti-inflammatories help reduce airway inflammation and decrease mucus production. Inhaled corticosteroids and corticosteroid pills are two types of antiinflammatories frequently used to treat COPD. Inhaled Corticosteroids Some people with COPD benefit from the use of inhaled corticosteroids. Inhaled corticosteroids are usually taken regularly. Long-term use at high doses can be associated with some side effects, such as loss of bone mineral density, so you should discuss the risks and benefits of these medications with your physician. Corticosteroid Pills Most people with COPD show little or no improvement when corticosteroid pills are given over a long period of time. They are, however, used in special circumstances, such as when your symptoms are getting worse or you need to be hospitalized. Long-term use of corticosteroid pills can result in serious sideeffects. Antibiotics Antibiotics are medicines that can be helpful for fighting bacterial infections. An infection can cause symptoms of COPD to worsen. This is called an exacerbation. Your doctor will select the best antibiotic for your infection. Antibiotics are not used to treat viral infections. 13 Flu Shot and Pneumonia Vaccine You need to get a flu shot every year. Even if you do get the flu, you will have a much milder case if you have the vaccination. The pneumonia vaccine, Pneumovax, is recommended every 7-10 years. You should also get other routine vaccinations. Check with your doctor on the recommendations for these vaccines. Remember: It is important to keep a list of your medications with you. If you go to any additional doctors, dentists, or specialists, make sure they are aware of all of your medications, including over-the-counter medications, vitamins, herbal medications, and dietary supplements. Even if your physician does not request this information, bring it up! Helpful Hints for Managing Your Medications • Use a daily routine for taking your medications. Pick something you do everyday (i.e. waking up, brushing your teeth, eating meals, going to bed), and plan to take your medications around that activity. • Use a medication checklist or worksheet to record when you take medications. Place the checklist someplace visible to use as a reminder. • Pack your medications in pill boxes to help you remember to take them. 14 Other Treatments for COPD Pulmonary Rehabilitation Pulmonary rehabilitation (rehab) is a coordinated program of exercise, diseasemanagement training, and counseling that can help you stay more active and carry out your day-to-day activities. These programs are included in most hospitals but may be restricted to patients with severe forms of COPD or those who have exacerbations that require short-term hospitalization. Most rehabilitation programs are offered on an outpatient basis. What is included in a pulmonary rehab program will depend on what you and your doctor think you need. It may include exercise training, nutrition advice, education about your disease and how to manage it, and counseling. The different parts of the rehab program are managed by different types of healthcare professionals (doctors, nurses, physical therapists, respiratory therapists, exercise specialists, dietitians), who work together to develop a program just for you. Even if you cannot get into a formal rehabilitation program, your doctor may be able to help you find a qualified person to develop a suitable set of exercises and activities that will help you improve your quality of life. Oxygen Treatment Oxygen treatment can help patients with COPD who have a hard time getting enough oxygen and have shortness of breath. Oxygen is often stored in a portable tank that you may take with you as you carry out your daily activities. Oxygen therapy helps people with severe breathlessness from COPD do tasks or activities with less shortness of breath, protects the heart and other organs from damage, helps people with COPD sleep more during the night and improves alertness during the day. Not everyone with COPD requires oxygen. Your doctor will probably want to run some blood tests to determine the amount of oxygen in your blood before recommending this treatment. Surgery For some people with severe emphysema, surgery may be recommended. Lung volume reduction surgery (LVRS) is a procedure during which surgeons remove sections of damaged tissue from the lungs of patients with emphysema. A transplant involves removing a lung of a person with COPD and replacing it with a healthy lung from a donor. 15 Surgery is usually done for people who have: • Severe symptoms. • Not improved by taking medicines. • A very hard time breathing most of the time. 16 Managing and Preventing Exacerbations People with COPD often have exacerbations – times when their symptoms suddenly get worse. When this happens, you have a much harder time catching your breath. You may also have chest tightness, more coughing, change in mucus and its color, and a fever. It is important to call your doctor if you have any of these signs or symptoms. Your doctor will look at things that might be causing these signs and symptoms to suddenly worsen. Sometimes the signs and symptoms are caused by a lung infection. Your doctor may want you to take an antibiotic medicine that helps fight off the infection (see medication page). Your doctor may recommend that you spend time in the hospital if: • You have a lot of difficulty catching your breath. • You have a hard time talking. • Your lips or fingernails turn blue or gray. • You are not mentally alert. • Your heartbeat is very fast. • Home treatment of worsening symptoms doesn't help. Staying away from lung irritants such as pollution, dust, and certain cooking or heating fumes is also important. For example, you should stay in your house when the outside air quality is poor. It is important to keep the air in your home clean. Below are some suggestions that may help you in your home: • Keep smoke, fumes, and strong smells out of your home. • If your home is painted or sprayed for insects, have it done when you can stay away. • Cook near an open door or window. • If you heat with wood or kerosene, keep a door or window open. • Keep your windows closed and stay at home when there is a lot of pollution or dust outside. 17 When Should I Get Medical Help When you are having symptoms, it is important to know whether treatment should begin at home, the physician's office, or the emergency room. If you have any of the following symptoms, call your doctor right away. • If you are finding that it is becoming more difficult to catch your breath. • Your coughing has gotten worse. • You are coughing up more mucus, or the mucus has changed in texture or color. • You have signs of infection (such as a fever and feeling poorly). Do not wait until your next appointment to make the call, and do not change or stop taking your medications without first talking to your doctor. If your symptoms are discovered early, your doctor may be able to relieve them by changing your medications. Get Emergency Help If You See Any of These Danger Signs: • You have a lot of difficulty catching your breath. • You have a hard time talking. • You are confused, or feel like you are going to faint. • Your lips or fingernails turn blue or gray. • You are having difficulty staying mentally alert. • Home treatment of worsening symptoms doesn't help. Be prepared and have information on hand that you or others would need in a medical emergency, such as information on medicines you are taking, directions to the hospital or your doctor’s office, and people to contact if you are unable to speak or call them. 18 How Do I Talk to My Doctor? Taking an active role in your health care can help you get the best care possible from your doctor. One way to do this is to improve your relationship with your doctor. The following are some tips to help you and your doctor improve your health care together. Talk to Your Doctor Be sure to tell your doctor about any current and past healthcare issues or concerns. It's important to share any information you can, even if you're embarrassed. Making lists is extremely valuable to both you and your doctor. If you want to get advanced, you can create a “health journal” for yourself on paper or in a notebook, and bring it to your appointments. Give the Following Information to Your Doctor During the Exam: • Any symptoms you are having. • Your health history. • Personal information, including whether you are stressed or whether your life is changing. • Any medicines you are currently taking. Bring them with you or create a list of all your medicines. Include information about when and how often you take the medicine. You should also write down the strength of the medicine (for example, do you take 150 mg or 200 mg?). • Any side effects you have from your medicine(s), especially if it makes you feel sick, or if you think you may be allergic to it. • Any vitamins or supplements you take. • Any x-rays, tests results, or medical records you have. • • • • Tips for Talking to Your Doctor Make a list of major items you want to talk about Ask questions Take information home with you Follow up with your doctor 19 Ask Questions Bring a list of things you want to talk about (including questions) – this list can include questions about medications, symptoms, or other concerns that you have. Don't be afraid to speak up. It's important for you to let your doctor know if you don’t understand something. If you don’t ask questions, your doctor will think you understand everything he or she has told you. The following are some tips on asking your doctor questions during the exam: • Ask every time you don't understand something. • If you have questions before the appointment, just write them down and ask them during the exam. Be sure to write down the most important questions first to make sure they are answered. • Tell your doctor when you need more time to talk about something. If the doctor isn’t available to help, you should be able to talk to a physician assistant or a nurse. If no one else is available, see if you can schedule another appointment to continue your talk. Take Information Home With You Taking written or recorded information home with you can help you remember information and instructions any time you need. Your doctor is a good source of accurate information you can trust. The following are types of information you can take home with you: • Notes that you have taken during the appointment. It's ok for you to write down the information your doctor gives you. Sometimes it helps to bring a friend or family member with you, especially if you have difficulty writing. They can help write down the answers to your questions. • Written instructions from your doctor. • A tape recording. Ask your doctor if it's ok to bring a tape recorder to the appointment. • Brochures or other educational materials. If there aren't any available, ask where you can find some. 20 Follow-up With Your Doctor Make sure to follow any instructions your doctor gave you during the appointment, like taking medicine, scheduling a test, or scheduling an appointment with a specialist. If you’re confused or if you've forgotten some information, it’s ok to contact your doctor. The following are some common reasons you may need to call your doctor: • If you have any questions after the appointment. Ask to leave a message with the doctor or speak with a nurse. • If you start to feel worse or have problems with your medicine. • If you had tests and haven’t gotten the results. Once you’ve decided to take an active role in managing your illness, you and your doctor can work together to set goals that will lead to better health. There may be different treatment options available to you. Talk to your doctor and help him or her create a plan that’s right for you. After all, nobody knows more than you do about your feelings, your actions, and the way your health problems affect you. 21 How Do I Get the Most out of Life? Having a diagnosis of COPD means you will be living with a chronic illness. COPD is a long-term health condition that involves managing more than just medical symptoms. It involves a wide range of emotions. For example, many people experience strong feelings like anger, fear, anxiety, guilt, sadness, and loneliness. This is completely normal and represents the first stages of coping and learning to accept the illness. Chronic illness can have a major impact on a person’s roles and responsibilities in life, and his or her plans for the future. Sometimes, resulting dependence on others can strain relationships and negatively affect self-esteem. In short, when you live with chronic illness, almost every aspect of life can take on a new dimension. But understand that you have the ability to live well with chronic illness. Living well requires an approach that is realistic, but also positive. You can't eliminate your condition, but you can understand the illness and your options, and then take steps to adapt along the way. You will probably feel overwhelmed and out of control now and then; but remember that no matter what happens, you always have a choice about how you respond. You can get the most out of life by a combination of sticking to your medical treatment, making changes to your lifestyle, adopting a positive outlook, and communicating effectively with your healthcare team. The following sections are meant to help you develop skills in maintaining and improving your own well-being. Taking control over your own well-being will help you gain greater independence and confidence in dealing with the physical and emotional challenges of a long-term illness. 22 Making Healthy Lifestyle Choices When dealing with the challenges of a chronic illness is part of your daily life, your choices and decisions can have a powerful impact on how you feel. In some cases, lifestyle changes can help slow lung disease and contribute to a better quality of life. The following information lists lifestyle changes that your doctor may suggest, along with reasons for each change and suggestions for how to accomplish them. These changes can help relieve some of symptoms associated with COPD and reduce strain on your lungs and body. Making Healthy Lifestyle Choices • • • If you smoke, stop smoking; or at least cut down. Eat healthy foods (high-protein diet, vegetables and fruits) Stay as active as possible, and be sure to get adequate sleep. If you smoke, stop smoking or at • Monitor your health by watching your weight least cut down. Stopping smoking is and your cholesterol and blood-pressure the single most important thing a levels and scheduling regular medical check-ups. smoker can do to live longer. If you have tried to quit and have gone • Actively manage your medications. back to smoking again, there are things that can help. These include products to help you stop smoking, joining a stop-smoking group (sometimes called smoking cessation treatment), or alternative therapies such as hypnotherapy or acupuncture. Eat healthy foods. Right now, your body needs the best nutrition. Ask your family to help you buy and fix healthy foods. Eat lots of fruits and vegetables. Eat foods that are high in protein like meat, fish, eggs, milk, and soy. Your doctor may need to refer you to a dietician to help you determine what diet would fit your needs. Stay as physically active as possible. (Always check with your doctor before starting an exercise program. Find out how often you should exercise, and ask for a list of exercises and activities that would be appropriate for you.) 23 Often people make the mistake of believing that if they try to avoid becoming short of breath, they will protect their lungs. THIS IS NOT TRUE! Remaining physically active can reduce stress and improve energy, circulation, blood pressure and ability to breathe. Walking, swimming and biking are popular activities for people with chronic medical conditions. It’s important not to let your long-term health condition change your normal attitudes about exercise. You should walk every day, trying to do a little more than you did the day before. Start by walking in your house, then try walking out of doors (except when there is poor air quality) — walking longer distances each time. Monitor your health. One way to do this is to listen to your body and track its changes. Look for patterns in your life that lead to positive and/or negative effects on your physical health (for example, climate changes, certain foods, exercise, doing pleasant activities, etc.). This kind of monitoring at home lets you spot potentially harmful changes before they turn into real trouble. Maintain a healthy body weight. Drop extra pounds or gain weight (if recommended by your doctor). If you need to lose weight, keep off the extra pounds by limiting your total daily caloric intake, following a low-fat diet, and exercising on most days. Don’t try to lose the extra weight too quickly. Losing weight slowly and steadily (about a pound a week) is healthier, and you’re more likely to keep the weight off for good. If you need to gain weight to maintain positive health, look for foods with high levels of protein (for example, fish, chicken, low-fat meats) and eat frequent, healthy snacks, such as fruits and vegetables. Get the flu shot and pneumonia vaccine. You need to get your flu shot every year. Even if you do get the flu, you will have a much milder case if you have the vaccination. The pneumonia vaccine, Pneumovax, is recommended every 7-10 years. You should also get other routine vaccinations. Check with your doctor on the recommendations for these vaccines. Actively manage your medications. Remembering to take one pill a day is tough; managing 10 or more is even more difficult. Knowing about the drugs you take (why you take them, how best to take them, and what problems to watch out for) is as important as learning about your condition. In addition, talking with your doctor, nurse, or a pharmacist can put drug information into perspective. Schedule regular medical checkups. See your doctor at least twice a year, even if you are feeling fine. Make sure you bring a list of medicines you are 24 taking to your doctor visit. If you are taking medicines, make sure you ask your doctor for refills so you do not run out. Know when to get medical help. Sometimes it’s hard to know whether you should schedule an appointment to talk to your doctor about your symptoms or problems with medications, or whether you should seek emergency care. 25 How Do I Get the Most out of Life? When you live with a chronic illness, you may not always have a choice of what difficulties you are presented with, but you always have a choice about how you respond. Remember that your choices and decisions have a powerful impact on how you feel, both physically and emotionally. The following are some suggestions to strengthen the ways in which you cope with your illness. Learn as much as possible about your illness and what you can do to help yourself feel better. Educate family and friends to help them understand. Be creative. If your illness impairs your ability to do things you enjoy, be creative about possible ways to get around obstacles. You can try learning new or different ways of doing things and trying new activities. For example, if gardening is not possible, try growing houseplants. If you do not have the energy to go to the movies, try renting a movie and creating a “theatre” atmosphere at home (e.g. snacks, lighting, etc). A chronic medical condition does not affect your creativity, and there are usually many ways to maintain the quality of your life. Try to focus on what you want and can do, rather than the things you want but cannot do. Say to yourself, "Given the limits of my physical ability, I will do whatever it is I want to do, for as long as I can." Make an effort to focus on the good things in your life, such as supportive relationships and activities that bring joy, pleasure, or usefulness. Learn to live in the moment and enjoy life’s simple pleasures. You may want to use a notebook to keep track of things that make you feel happy or peaceful. Research has shown that having a positive outlook can improve your quality of life and give your physical health a boost. Redefine what quality of life means to you, recognizing that there are many ways to lead a meaningful life. Remind yourself that your identity (who you are) goes much deeper than your physical abilities. Find an outlet for expressing your thoughts and feelings, perhaps talking with a friend, keeping a journal or participating in a support group. 26 Accept that how you feel and what you can do may vary from day to day, and be flexible about plans and expectations. Take things one day at a time. Recall past life challenges and how you overcame them to remind yourself of your strength and courage, and to generate hope. Stay connected to people who care. It is important to continue looking after your relationships, because they play a large part in helping you feel good, and maintaining your self-worth. If your social network is limited, develop new connections through volunteering, taking an adult education course or joining a club or group. If you are a spiritual person, set aside quiet time each day to give attention to your spirituality and help keep you grounded. Turn to your faith for comfort. Be on guard for depression and stress. It is not unusual to have emotional ups and downs when dealing with a chronic illness. Some days you may feel tired and depressed, or angry about your limitations, and worried about the future. These emotions are not bad in themselves, but they do wear you out. For some people these feelings fade as they begin to take charge of their health and make positive lifestyle changes. Others find that their mood is unbalanced and may feel more worried and depressed than is usual for them. Talk to your doctor if you have feelings that interfere with your ability to enjoy life, or if you find yourself making unhealthy lifestyle choices. You may not be used to talking to your doctor about your feelings or problems in your personal life. But remember, he or she can’t always tell that you’re feeling stressed, anxious or upset just by looking at you. First, he or she will need to make sure that other health problems aren’t causing your physical symptoms. If your symptoms aren’t caused by other health problems, you and your doctor can begin to address the emotional causes of your symptoms. Your doctor may suggest ways to treat your physical symptoms while you work together to improve your emotional health. Accept offers of help from relatives and friends, and ask for assistance if necessary. Be specific about the kind of help you need. Also, find out about services in your community that may be able to help you now or in the future. If you have a hard time asking for help, consider what you would do if you were fully healthy and a friend of yours had your medical condition. What 27 would you do? Would you be upset if your friend asked for the specific help that was required? Chances are you would feel fine about helping out if you could. In fact, it would likely make you feel good to be able to help someone you care about. Try to be as kind to yourself as you would be to another when it comes to asking for help. Ask friends and family to understand. Let people around you know when you are short of breath. Do not feel embarrassed because you cannot join others in some activities. As before, think about what you might do if a friend or loved one was in a similar position to yours. How would you react? 28 Practical Tips for Daily Living Take an active role in your treatment. Follow the management plan prescribed by your doctor, which might include medication, diet changes, exercise, rest, adaptive aids, lifestyle changes and stress-management techniques. Talk to your doctor. Once you’ve decided to take an active role in managing your illness, you and your doctor can work together to set goals that will lead to better health. There may be different treatment options available to you. Talk to your doctor, and help him or her create a plan that’s right for you. After all, nobody knows more than you do about your feelings, your actions and how your health problems affect you. Do as much for yourself as possible, to maintain your abilities and independence. Seek ways to streamline your life. Set priorities and don't waste time or energy on unimportant things. Pace yourself to avoid exhaustion. Develop daily routines, but don’t be inflexible. Simplify necessary tasks to carry out daily activities more easily and safely. You can simplify daily activities at home by: • Asking your friends and family for help. • Doing things slowly. • Doing things sitting down. • Putting things you need in one place that is easy to reach. • Finding very simple ways to cook, clean, and do other chores. • Wearing clothes and shoes that are easy to put on and take off. • Asking for help moving your things around in your house so that you will not need to climb stairs as often. • Picking a place to sit so that you can enjoy and visit with others. 29 Keep busy so your difficulties don’t preoccupy you. Stay in touch with friends, and plan daily activities to get out of the house. Try to keep up with your hobbies, and perhaps try new ones. Still, don’t overdo it. Keep your activities within the limits set by your doctor. Listen to your body so you know when it is time to rest and rebuild your energy. Find something relaxing to do each day, such as reading, listening to music or talking to a friend. 30 Some Final Thoughts Adjusting to life with a chronic illness or feeling good about the future may seem hard at first, but it can be done. It requires an approach that is realistic and positive. Think of yourself as living with your illness, rather than suffering from it. Attitude really does make a big difference Understand that your choices and decisions can have a powerful impact on how you feel both physically and emotionally. However unwelcome it may be, illness, like other difficulties in life, presents opportunities for growth. You have the opportunity to be courageous in living your life to the best of your ability. 31 Glossary Alveoli Antibiotics Asthma Beta-2 agonist Bronchi Bronchioles Small air sacs in the lungs where oxygen is exchanged for carbon dioxide Medicines that can be helpful for fighting bacterial infections that make symptoms of COPD worse. A disease that features narrowing of the airways, making breathing difficult. This narrowing can be reversed by treatment with bronchodilators Drugs that make breathing easier by relaxing and widening the airways. The two big airways that take air from the trachea, or windpipe, to the lungs. One bronchi goes to the left lung and one to the right lung The smaller airways that take air from the bronchi to the lungs. About 24 bronchioles branch off each bronchi and go deep into the lungs, delivering air to the alveoli Medications, often taken by an inhaler, that help open air passageways in the lungs Hair-like cells that sweep away dust and mucus from the lungs. They beat in one direction (upwards) so particles are driven up to the throat where they are swallowed or coughed out Medications taken by inhaler to reduce inflammation in the air passages and lungs. (Pronounced disp–NEE–uh) A medical term for difficult or labored breathing or shortness of breath. Damage to the air sacs (alveoli) so that the walls break down, making the air sacs bigger. This makes the lungs less able to transfer oxygen to the blood to supply the rest of the body The sudden worsening of a disease or its symptoms Produced in the airways to warm and moisturize the air before it reaches the lungs. It also traps foreign bodies or infectious agents before they reach the lungs. Also called sputum or phlegm A device that delivers a drug by pumping a jet of air or oxygen through a solution of the drug, to produce a fine mist. This is then breathed in through a mask See mucus A machine that measures how much you can breathe out of your lungs and how quickly See mucus The gasping or whistling sound made when breathing becomes difficult Bronchodilator Cilia Corticosteroids Dyspnea Emphysema Exacerbation Mucus Nebulizer Phlegm Spirometer Sputum Wheeze (wheezing) 32 Acknowledgments: • American Thoracic Society • U.S. Department of Health & Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute • The Jewish National Hospital COPD Program Resources: Name National Heart, Lung and Blood Institute American Lung Association American Academy of Family Physicians Address NHLBI Health Information Center P.O. Box 30105 Bethesda, MD 208240105 Phone Number 301-592- 8573 Website www.nhlbi.nih.gov 800-586-4872 www.lungusa.org www.family.org 33