A Patient’s Guide to Understanding Congestive Heart Failure
“ACCESSING LIFE”
Contents:
• • • • • • • • • What is This Booklet About? What is Congestive Heart Failure (CHF)? What are the Signs and Symptoms of Heart Failure? What Can Be Done for Heart Failure? When Should I Get Medical Help How Should I Talk to my Doctor? How Can I Get the Most out of Life Glossary Acknowledgments and Resources 3 4 9 12 18 20 23 32 33
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What Is This Booklet About?
The information in this booklet is meant to be a resource for people with congestive heart failure (CHF) and their family and friends. The following sections were designed to provide specific information about CHF including the causes, symptoms, and treatments available. This booklet will also offer people with CHF information about skills in maintaining and improving their own well-being. It is intended to help people living with CHF 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 cardiologist (heart specialist) may give based on his or her knowledge of your condition.
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What is Congestive Heart Failure?
The term heart failure suggests that the heart has stopped working or has "failed.” This is not the case. Heart failure is a condition or a collection of symptoms that indicate that the heart is not pumping enough blood to meet the body's energy demands. As a result, fluid may build up in the lungs, legs and in other tissues throughout the body. This is why the condition is also referred to as congestive heart failure. In this booklet, we use the terms CHF and heart failure interchangeably. Heart failure typically develops slowly after injury to the heart, such as a heart attack, too much strain on the heart because of years of untreated high blood pressure or a diseased heart valve. As the heart muscle weakens, it needs to pump harder to keep blood flowing to the body. When this happens, fluid can build up in the lungs and among other organs, creating a feeling of breathlessness. Although there is no cure for CHF, there are things you can do to improve your condition. In this section you'll find information about CHF, its symptoms, how it is diagnosed, and treatment options.
Heart Failure Basics
Heart failure is a condition that reduces the heart’s ability to pump blood. It can result from a heart attack, untreated high blood pressure, coronary artery disease or another problem. Because of heart failure, the heart cannot pump enough blood to supply the body’s need for oxygen. As a result, fluid may build up in the lungs, legs and other tissues throughout the body. That’s why when you have heart failure you may experience swelling, weight gain, shortness of breath or trouble breathing at night. The term congestive heart failure is sometimes used to describe the condition. CHF is not always apparent. Some people in the very early stages of heart failure may have no symptoms at all. And others dismiss getting tired and being short of breath as simply signs of growing older or being out of shape.
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To understand what happens in heart failure, it is first important to know how a normal heart works.
How a Normal Heart Works
The heart has two muscular pumps that act together. Blood from your muscles and organs enters the right side of your heart. The heart pumps the blood to the lungs where it takes up oxygen and removes the carbon dioxide it has been carrying. This oxygen-rich blood then enters the left side of the heart. From here it is pumped through the circulatory system, which delivers blood to all areas of your body. An electrical system regulates the heart and uses electrical signals to contract the heart’s walls. When the walls contract, blood is pumped into your circulatory system. Your circulatory system is made up of a network of blood vessels, such as arteries, veins, and capillaries. The vessels in this network carry blood to and from all areas of your body. A system of inlet and outlet valves in your heart’s chambers works to ensure that blood flows in the right direction. Your blood carries the oxygen and nutrients that your organs and muscles need to function normally. Blood also carries carbon dioxide, a waste product, to your lungs to be passed out of your body and into the air. A healthy heart supplies the areas of your body with the right amount of blood at the right rate needed to function normally.
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The illustration above shows a cross-section of a healthy heart and its inside structures. The blue arrow shows the direction in which oxygen-poor blood flows from the body to the lungs. The red arrow shows the direction in which oxygenrich blood flows from the lungs to the rest of the body. Heart failure develops over time as the pumping action of the heart grows weaker. It can affect the left side, the right side, or both sides of the heart. Most cases involve the left side, where the heart can’t pump enough oxygen-rich blood to the rest of the body. With right-sided failure, the heart can’t effectively pump blood to the lungs, where the blood picks up oxygen. The weakening of the heart’s pumping ability causes: • A buildup of fluid in the feet, ankles, and legs • Blood and fluid to "back up" into the lungs • Tiredness and shortness of breath
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What Causes Heart Failure?
Common causes of heart failure include: Coronary artery disease- narrowing of the arteries; decreases blood flow to the heart Previous heart attack - a heart attack suddenly shuts off blood flow to part of the heart muscle; scar tissue and non-functioning heart tissue caused by a heart attack can interfere with the normal function of the heart Valve disease – damaged valves can cause inefficient pumping, causing the heart to work harder (see valve disease on pg. 8) Congenital heart disease – these conditions are present from birth. If undetected, they can cause damage over time Cardiomyopathy – a disease causing weakness in the heart muscle due to a lack of oxygen or other organ problems. Endocarditis – a rare but serious infection of the lining of the heart or heart valves, which can cause the heart to work less efficiently Myocarditis – infection of the heart’s muscle tissue, which inflames the heart and makes it unable to pump as efficiently Heart failure can also result from conditions that put an extra workload on the heart. The heart may have coped with this increased workload for many years before heart failure occurs. Problems that can cause an increased workload include: High blood pressure (hypertension), which increases the risk of heart attack Diabetes Heart valves that either leak or are too narrow Thyroid gland disease A heart rate that is much too fast, or too slow, or irregular, or Anemia These conditions add to the workload of the heart and arteries. If they continue for a long time, the heart and arteries may not function properly.
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Heart Failure and Valve Disease
The heart valves ensure that blood flows in one direction through the heart. Heart-valve disease causes the valves either to not close properly (resulting in a leaky valve) or to not open fully (resulting in a narrowed valve opening). Both types of valve disease cause the heart to work harder, which over time may lead to heart failure.
Left-Sided Heart Failure
The most common causes of heart failure of the left side of the heart are damage to the muscular pump of the left ventricle caused by a heart attack, prolonged high blood pressure, and diseases of the mitral valve and aortic valve. The main symptoms of left heart failure are tiredness and breathlessness.
Right-Sided Heart Failure
The most common cause of heart failure on the right side of the heart is leftheart failure (see above). Right-heart failure can also be caused by lung diseases, which can result in the right ventricle not pumping efficiently, causing the heart to become enlarged, and producing symptoms of right-heart failure. The most common sign of right heart failure is swollen ankles and feet. Symptoms include extreme tiredness and breathlessness following physical activity.
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What Are the Signs and Symptoms of Heart Failure?
Heart-failure symptoms are not always obvious. Some people in the very early stages of heart failure may have no symptoms at all. Others may dismiss feeling tired and experiencing shortness of breath as signs of growing older or being out of shape. Some heart-disease symptoms are more obvious. When the heart is not pumping properly or efficiently, daily activity can cause shortness of breath or difficulty in breathing when lying down. The legs and ankles may swell because the body is retaining water. Feeling weak and tired is common. Ordinary daily activities like going to the grocery store or even walking up a flight of stairs can be exhausting. Because of the heart’s inability to efficiently pump blood and supply your organs, such as the kidneys and the brain, you may experience a number of symptoms, including: • • • • • • • • • Shortness of breath Swelling of the feet and legs Lack of energy, feeling tired or fatigued Difficulty sleeping at night due to breathing problems Swollen or tender abdomen, loss of appetite Cough with "frothy" sputum (mucus) Palpitations (a fluttering or flip-flop feeling in the chest). Increased urination at night Dizziness, confusion, impaired memory
Being able to describe your heart-failure symptoms will help your doctor classify the severity of your heart failure. Knowledge of your symptoms will also help you and your doctor to monitor your progress and the effects of any treatments you receive.
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How is Heart Failure Diagnosed?
Only your doctor can tell if you have heart failure and how far the condition has progressed. Your doctor will review your medical history, including past and present illnesses, family history, and lifestyle. As part of your physical examination, the doctor will check your heart, lungs, abdomen, and legs to see if signs of heart failure are present.
Heart-Failure Classification
Doctors classify symptoms based on how much they limit your daily activity. Heart-failure symptoms are usually graded based on a special classification system developed by the New York Heart Association classification (NYHA Class I, II, III, or IV). The classifications in this table are based on symptoms experienced during physical activity.
NYHA Classification
Class I: Class II:
No limits—ordinary physical activity does not cause undue tiredness or shortness of breath. Slight or mild limits—comfortable at rest, but ordinary physical activity results in tiredness or shortness of breath. rest, but less than ordinary physical activity causes tiredness or shortness of breath.
Class III: Marked or noticeable limits—comfortable at Class IV: Severe limits—unable to carry on any physical
activity without discomfort. Symptoms are also present at rest. If any physical activity is undertaken, discomfort increases.
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Diagnostic Tests
To rule out or confirm the diagnosis of heart failure, you will probably need to have some further tests done. One or several of these diagnostic tests may be ordered: Echocardiogram (also called an “echo”) - A type of ultrasound scan to check the pumping action of the heart. This painless test provides pictures of the heart in action and allows doctors to check how well its pumping action is working. It often gives important clues about the cause of the condition. It also evaluates the valves and other structures within the heart and is able to provide an estimate on the size of the chambers. Electrocardiogram (ECG) - Records the electrical activity of the heart, revealing evidence of previous heart attack, enlargement of the heart, and abnormal rhythms. Chest x-ray - Helps assess the heart's size and shape, as well as any abnormalities within the lungs. If heart failure is present, the chest x-ray typically shows the heart to be enlarged; and it may reveal some fluid in the lungs. Exercise test (stress test) - Reveals how well your heart functions when you exercise. Cardiac catheterization - An invasive diagnostic method used to measure pressures in the heart and evaluate cardiac (heart) structures. It is most often used to determine whether there are any "blockages" in the arteries that supply the heart muscle with blood.
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What Can Be Done for Heart Failure?
Although heart failure is a chronic condition with no cure, there are heart failure treatments that can slow the progression of the disease and improve your quality of life. In fact, the outlook for people with heart failure is more encouraging than ever before. The goals of treatment for heart failure are to: Relieve your symptoms with no or minimal 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 heart failure is different for each person. Treatment is based on your personal preference and the severity of your symptoms. Your primary care doctor may recommend that you see a heart specialist called a cardiologist. Medicines, device therapy, and sometimes surgery are used to help relieve symptoms and to help people with heart failure breathe more easily and stay active. Advances in treatment mean that the outlook for many people with heart failure has improved substantially in recent years. Your doctor may also recommend lifestyle changes like quitting smoking and reducing salt intake.
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Medications to Treat Heart Failure
Heart failure medications are prescribed to reduce symptoms associated with heart failure and to slow the progression of heart disease. Only your doctor can determine the right combination of medications to treat your heart failure symptoms. The medications most commonly used are listed below. ACE inhibitors – angiotensin-converting enzyme (ACE) inhibitors. Used to control symptoms and may slow the advance of the disease. ACE inhibitors reduce the heart’s workload by making the blood vessels expand, which lowers blood pressure. They also reduce the tendency to retain salt and fluid. Angiotensin II receptor blockers (ARBs) - Similar to ACE inhibitors, these are used to keep blood pressure from rising. They lower blood pressure without lowering heart rate. Anti-platelet drugs - Used to reduce the risk of having a heart attack or stroke. They help to stop the blood platelets from sticking together and forming a clot. The most common kind of anti-platelet drug is aspirin. Clopidogrel is sometimes used, particularly if aspirin disagrees with you. Beta-blockers - Used to help control heart rate and reduce the heart’s tendency to beat faster. Used to help the heart maintain a slower rate and lower blood pressure. Often used in combination with diuretics, digoxin, and ACE inhibitors. Blood thinners (anticoagulants) - Used to reduce the risk of blood clots in legs, lungs and heart. The most common type is warfarin. Calcium channel blocker - Sometimes used to help lower blood pressure and improve blood circulation in the heart. Diuretics (water pills) - Medications prescribed for fluid retention and swelling of feet, legs and abdomen. Diuretics prompt the kidneys to filter more sodium and water from the blood. With less fluid in the body, the heart can pump and circulate blood with less effort. Additionally, diuretics can decrease fluid retention in the lungs, ankles, legs and other parts of the body. Be aware that diuretics can deplete potassium, causing weakness and fatigue. They
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sometimes also cause leg cramps. In addition, the stronger diuretics act very quickly, which means that you may need to pass water urgently. Digoxin - Increases the force of the heart’s contractions to relieve heart-failure symptoms. Digoxin slows certain types of arrhythmia (irregular heartbeat). It is not commonly prescribed for people with a normal heart rhythm, but it is still a useful treatment for some patients who have a rapid, irregular heart rhythm (known as atrial fibrillation), which can sometimes worsen heart failure. Digoxin may cause loss of appetite and nausea. Potassium - Helps control heart rhythm and is important to the nervous system and muscles. Because diuretics remove potassium, doctors may advise some patients to increase potassium intake. Vasodilators - Cause the blood vessels to widen or relax so blood can flow more easily. ACE inhibitors are one type of vasodilator. These can help relieve symptoms and improve tolerance for exercise. Vasodilators can also be used to reduce chest pain.
Prescription medications that can make heart failure be worse: Some drugs can make congestive heart failure worse or change the effect of heart-failure medications. Some drugs that can worsen heart failure are antiarrhythmics (examples: quinidine, flecainide, propafenone, sotalol, moricizine), calcium channel blockers (examples: verapamil, diltiazem, amlodipine, nifedipine), and certain beta-blockers. Viagra, Levitra, and Cialis should not be used if you are taking nitrates (examples: Isordil, Sorbitrate, Imdur, Monoket, nitroglycerin).
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Nonprescription medications that can make heart failure be worse: Just because over-the-counter drugs can be obtained without a prescription does not mean they are harmless. Certain ones can aggravate heart-failure symptoms or alter the effect of medications. If you have headaches, muscle pain, or some other problem for which you need relief, consult your doctor before taking any pain reliever or anti-inflammatory drug (examples: ibuprofen, aspirin, Advil, Nuprin, Motrin, Naprosyn, and Feldene, and certain nonsteroidal anti-inflammatory drugs such as cox-2 inhibitors such as Celebrex and Bextra). Some nonprescription drugs are high in sodium, which can cause fluid retention (examples: Alka-Seltzer, Vicks cough syrup, Bisodol, Fleets enema). Read every label before using a product. Most decongestants contain stimulants such as epinephrine or pseudoephedrine. They can stress the heart by elevating the heart rate, so they should be avoided.
Remember: It is important to know the names of your medications, how they work, how much to take, and when to take them. It might be helpful 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 physicians do not request this information, bring it up!
Helpful Hints for Remembering Your Medications
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Use a daily routine for taking your medications. Pick something you do everyday (such as 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.
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Other Treatments for Heart Failure
Heart failure cannot always be controlled by medication. Some surgical procedures and devices that can be implanted in the body can help some people with heart failure. These are described below. Device Therapy Pacemakers: The traditional pacemaker has two parts: lead wires and a pulse generator, which houses a battery and a tiny computer. The lead wires sense the heart's electrical activity, and when the computer determines that the heart rhythm is off, it responds by sending electrical impulses to the heart muscle to correct its rate. Pacemakers are usually used to treat heart rhythms that are too slow. Pacemakers can also be used to treat fast rhythms or to increase the heart rate in response to changes in the patient's activity level. Some people may benefit from having a bi-ventricular pacemaker implanted, to help coordinate the contractions of the heart muscle. ‘Bi-ventricular’ means that the pacemaker has leads that are connected to both ventricles. One lead is connected to the right ventricle and one to the left ventricle. Another lead is connected to the right atrium. Implantable cardioverter defibrillators (ICD): An ICD is a surgically inserted electronic device that constantly monitors heart rate and rhythm. An ICD is similar to a pacemaker but is usually larger. ICD’s help restore a normal heart rhythm. When they detects a very fast, abnormal heart rhythm, they deliver electrical energy to the heart muscle to help the heart beat in a normal rhythm again. Surgical Options If your heart failure is caused or made worse by a problematic valve, sometimes the best course of action is heart surgery to repair or replace the valve. If a patient’s heart failure is serious and irreversible, heart-transplant surgery may be considered. Valve surgery: If the heart failure is caused by valvular heart disease, you may be able to have an operation to give you a replacement heart valve. Left ventricular assist device (LVAD): This is a mechanical device placed in people to help the failing heart. It acts as a pump to support the circulation. The LVAD may be used for people who are waiting for a transplant or for those who
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have a severe heart infection and who are not eligible for a heart transplant. It can also be used to give the heart muscle time to rest and recover. This device is still being studied, so, currently, it is only available for a small number of people. Heart transplant: This is useful only in carefully selected people who have the type of disease that will respond to transplant without too great a risk of infection, and who have no other diseases that would complicate the transplant. This procedure is very stressful psychologically, and it requires a strict medical regime over several years.
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When Should I Get Medical Help?
Sometimes people feel unsure about when to contact their doctor. If you experience any of the following symptoms, call your doctor. Unexplained weight gain—3 or more pounds in 1 day or 5 or more pounds in 1 week Increased swelling in the ankles, feet, legs, or abdomen Severe or frequent shortness of breath, especially on awakening Abdominal fullness or bloating Loss of appetite or nausea Extreme fatigue or decreased ability to undertake daily activities A respiratory infection or bad cough A resting heart rate of 120 beats or more per minute A new or more noticeably irregular heartbeat Chest pain or discomfort that is relieved with rest Difficulty breathing during regular activities or at rest Difficulty sleeping or needing much more sleep than usual Decreased urination Restlessness or confusion Dizziness or lightheadedness Excessive, unexplained perspiration 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 more effectively relieve your symptoms.
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When Should I Call 911 or go to the Emergency Room? Call 911 or go to the Emergency room if you have any of the following:
New, severe chest pain or discomfort, especially if you are short of breath, sweating, nauseated, or weak A fast heartbeat (more than 120 to 150 beats per minute), especially with shortness of breath Shortness of breath that is not relieved by rest Sudden weakness or inability to move your arms or legs Sudden onset of a severe headache A fainting spell with loss of consciousness
Be prepared and have information on hand that you or others would need in a medical emergency, such as information about 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.
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How Should 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 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. 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 if 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. 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 they make you feel sick or if you think you may be allergic to them • Any vitamins or supplements you take • Any x-rays, test 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 (take notes) Follow up with your doctor
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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 to help you ask 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. 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 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.
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Follow-up with your doctor Make sure to follow any instructions your doctor gives 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 how your health problems affect you.
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How Can I Get the Most Out of Life?
When you receive a diagnosis of heart failure, this means you will be living with a chronic illness. It is a long-term health condition, which 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, or loneliness. Chronic illness can have a major impact on a person’s roles and responsibilities in life, and their 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. However, 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 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 and adapting to your illness will help you gain greater independence and confidence in dealing with the physical and emotional challenges of a long-term illness.
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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 heart disease and contribute to a better quality of life for people living with heart failure. Making Healthy Lifestyle Choices The following information lists lifestyle changes that your doctor • If you smoke, stop smoking or at least cut may suggest, along with reasons down. for each change and suggestions for how to accomplish them. • Eat healthy foods, limit your salt intake, and monitor your fluid intake. These changes can help relieve some symptoms associated with • Stay as active as possible and be sure to heart failure and reduce strain on get adequate sleep. your heart. • Monitor your health by watching your If you smoke, stop smoking or weight and your cholesterol and blood at least cut down. Stopping pressure levels, and scheduling regular smoking is the single most medical check-ups. important thing a smoker can do to live longer. If you have tried to • Actively manage your medications quit and have gone back to smoking again, there are things that can help. These include products to help you stop smoking, joining a stop smoking group (also known as smoking cessation treatments), or alternative therapies such as hypnotherapy or acupuncture. Eat healthy foods. Your body needs the best nutrition. Ask your family to help you buy and fix healthy foods. Eat lots of fruits and vegetables. Eat protein foods like lean meat (including chicken), fish, low-fat milk, and soy. Also, limit your salt intake. Sodium (salt) contributes to fluid retention, which can cause breathing problems and swelling and is bad for high blood pressure. Limit your daily intake to 2,000 mg of salt.
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Foods that are high in salt include cheese, bacon, canned meat, sausages, chips, smoked fish, and canned soups. Foods that are low in salt include fruit, vegetables, meat, poultry, eggs, pasta, rice, and potatoes. Don’t add salt to your food at the table, and avoid cooking with it. Remove the saltshaker from the table. You can use herbs and spices to add flavor instead Read labels on foods and some medications to find low-sodium versions. Salt often appears as sodium on food labels (6 grams of salt is equivalent to 2.4 grams of sodium.) Many frozen, processed, and precooked foods from the supermarket as well, as restaurant fast foods, are high in sodium and fat. Carefully follow your fluid-management guidelines. The general rule is to drink no more than 8 cups of fluid daily, including semi-liquid foods, such as yogurt and pudding, even if you feel thirsty. Some individuals with heart failure may need to further restrict fluids. 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.) Often people make the mistake of believing that if they try to avoid becoming short of breath, they will protect their heart. THIS IS NOT TRUE! Remaining physically active can include reducing stress, improving energy and improving circulation and blood pressure and ability to breathe. Walking, swimming and biking are popular activities for people with heart failure It’s important not to let your long-term health condition change your normal attitudes about exercise. 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 doors (but not 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 most days. Don’t try to lose the extra weight too quickly. Losing
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weight slowly and steadily (about a pound a week) is healthier, and you’re more likely to keep the weight off for good. If your weight goes up, it might be because your body is building up too much fluid. Call your doctor if you gain more than 3 pounds in a day or 5 pounds in a week, or if you start getting more breathless, or have more ankle swelling. If you need to gain weight to maintain positive health, look for foods with high levels of protein (such as 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 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. 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 taking to your doctor visit. If you are taking medicines, make sure you ask your doctor for refills so you do not run out.
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How Can 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 help you cope with your illness. Learn as much as possible about your illness and what you can and can't 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 (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.
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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 frustrated 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 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
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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. You need 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?
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Practical Tips for Daily Living
Take an active role in managing your illness every day. Follow the management plan prescribed by your doctor, which might include medication, diet changes, exercise, rest, lifestyle changes and stress-management techniques. 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 in places that are 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 where you can enjoy and visit with others 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.
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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.
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Glossary
A group of drugs used to treat high blood pressure and heart failure that block a specific enzyme that retains salt in the kidney and can cause heart and blood pressure problems; shown to decrease the risk of dying from a heart attack A condition caused by a deficiency of red blood cells; anemia reduces the amount of oxygen available to the body A chamber of the upper part of the heart atrium To do with the two ventricles of the heart bi-ventricular A type of drug that slows heart rate, lowers blood pressure, Beta-blockers controls chest pains and protects patients with prior heart attacks from future heart attacks A disease that weakens the muscles of the heart cardiomyopathy See ‘digoxin’ below digitalis A drug used to treat heart failure and certain abnormalities digoxin of heart rhythm; made from the foxglove plant digitalis Increases the output of water and salt in the urine; used to diuretic treat heart failure and lower high blood pressure; Also known as “water tablets” See “electrocardiogram” EKG An ultrasound picture of the heart that shows the structure echocardiogram of the heart and how it is working Swelling edema electrocardiogram A test to record the rhythm and electrical activity of the heart. Also called an ECG or EKG Implantable cardioverter defibrillator. A device that is ICD implanted in the body. If a dangerous heart rhythm occurs, the ICD will help restore a normal heart rhythm Heart failure caused by an inefficient pumping action of the Left-heart failure left side of the heart Left ventricular assist device; used to help the failing heart LVAD that acts as a pump to support the circulation The heart muscle myocardium Angiotensinconverting enzyme inhibitors (ACE) inhibitors pacemaker Right-heart failure ventricle A device implanted in the body that stimulates the heart to contract and produce heartbeats Heart failure caused by an inefficient pumping action of the right side of the heart A chamber of the lower part of the heart
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Acknowledgments:
This booklet was compiled with information from the US Department of Health & Human Services National Heart, Lung, and Blood Institute, The Cleveland Clinic Heart Book, the American Heart Association, Heart Failure Society of America, and ADAM.
Resources:
Name American Heart Association National Heart, Lung and Blood Institute Heart Failure Society of America Address
National Center 7272 Greenville Ave Dallas, TX 75231 NHLBI Health Information Center P.O. Box 30105 Bethesda, MD 208240105 Attn: Cheryl Yano, Executive Director Court International Suite 240 S 2550 University Avenue West Saint Paul, MN 55114
Phone Number
1-800-AHA-USA-1 or 1-800-242-8721 301-592- 8573
Website www.americanheart.org www.nhlbi.nih.gov
651-642-1633
www.hfsa.org
American Academy of Family Physicians
www.familydoctor.org
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