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Self-Care Handbook Learning to Live with Heart Failure Write down important phone numbers and keep them handy. Health-care provider Name ___________________________________________________________________ Phone Number ___________________________________________________________ Pharmacist Name ___________________________________________________________________ Phone Number ___________________________________________________________ Home health-care agency Name ___________________________________________________________________ Phone Number ___________________________________________________________ Oxygen equipment supplier Name ___________________________________________________________________ Phone Number ___________________________________________________________ An emergency contact Name ___________________________________________________________________ Phone Number ___________________________________________________________ If you have heart failure, this handbook is for you. This handbook is designed to help you and your family understand and manage heart failure. There are areas for you to track your medicines, diet, weight, and exercise. Family Members can be a wonderful source of support. Ask them to read this handbook with you. They will be able to help you: keep track of medicines cook nutritious meals stay active without overdoing it prevent infections get the support you need Heart failure cannot be cured, but by understanding it and following simple guidelines, you can lead a full and active life. CONTENTS What is heart failure ............... 2 Medicine .................................. 3 Track your medicines ........4 & 5 Weight, blood pressure, and stress........................................ 6 Track your weight ................... 7 High sodium foods ................. 8 Low sodium foods .................. 9 Sodium intake ........................10 Other lifestyle changes .......... 11 Exercise ..................................12 Preventing swelling and infection ..................................13 Support groups ......................14 What is heart failure? Heart failure means that your body is not pumping enough blood to meet your body’s needs. Heart failure does not mean that you are The healthy heart is strong enough to pump blood out of the heart so it doesn’t back up into the lungs and veins. about to die or that your heart has stopped. It simply means that your heart is not working as well as it should. The damaged heart causes slower blood flow to Heart failure can happen in different parts of the heart. Sometimes the heart weakens and A traffic jam happens when you heart is not the body. It can also cause blood to back up into the lungs and veins. pumping properly. Blood from the lungs or from the rest of the body backs up, just as traffic can back up at rush hour. is less able to pump blood out. This is called “systolic” failure. Or sometimes the heart cannot relax properly to fill with blood. This is called “diastolic” failure. Some people have both problems. To stop the traffic jam, the heart may enlarge its chambers to let in more blood. It may enlarge its muscle to beat with more force. These help keep the heart working almost normally in the early stages of heart failure. But these measures cannot keep your heart working properly over a long period of time - and can actually make matters worse. Heart failure also affects the kidneys’ ability to get rid of sodium and water. The excess water can cause your feet, ankles and legs to swell. The terms “congestive heart failure” means that your heart’s decreased ability to pump blood is accompanied by excess fluid in the lungs. Common symptoms of heart failure • shortness of breath • waking up due to shortness of breath • frequent cough or wheezing • bloating • swollen feet, legs and ankles • the need to urinate more often during the night • a sudden weight gain • nausea or loss of appetite • fatigue or weakness • confusion or decreased alertness • rapid or irregular heartbeat • swollen neck veins Heart failure usually doesn’t occur suddenly. It gradually worsens over time. Heart failure can be caused by: • coronary artery disease • past heart attack • high blood pressure • lung disease • heart valve disease or infection • heart muscle disease • heart defects present at birth • heart damage from alcohol or drug abuse • heart damage due to diabetes • abnormal heart rhythms • thyroid disorders If your symptoms change or worsen, contact your health care provider. 2 Medicine is a key factor in treating heart failure. Medicine can help make it easier for your heart to pump, strengthen your heartbeat and remove excess fluid from your body. It can also help improve your overall quality of life when used as directed. Your health-care provider may prescribe one or more types of medicine, such as: ACE inhibitors & angiotensin II receptor blockers (ARBs) Purpose: To open up your arteries and lower blood pressure. Side effects: May include a cough, dizziness, loss of taste, swelling, skin rash and high potassium levels. Beta blockers Purpose: To block the effects of chemicals that can make your heart work too hard. Side effects: May include shortness of breath, slow heartbeat, fatigue and low blood pressure. Digitalis (digoxin) Purpose: To make your heartbeat stronger and more regular. Side effects: May include nausea and loss of appetite, blurred vision, mental confusion, irregular heartbeat and headache. Diuretics (water pills) Purpose: To help your body get rid of excess fluid, making it easier for your heart to pump. Side effects: May include leg cramps, dizziness, skin rash and low potassium levels. Tips for managing your medicines Taken as prescribed, medicine can help you feel better. Taken incorrectly, medicine can be useless or, even worse, harmful. Follow these guidelines for taking your medicine. Ask questions about your medicines, such as “What are they for?” or “When should I take them?” Check the label before you take a medicine. Be sure you are taking the right one and have the correct dose. Always follow the directions. Don’t take medicine in the dark - it’s easy to make a mistake and take the wrong one. Tell your health-care provider if you have other prescriptions or take any over-the-counter medicines (even aspirin or other pain relievers), nutritional supplements or herbal remedies. They could react with medicines he or she prescribes. Ask your health-care provider what you should do if you miss a dose. Never take a larger dose the next time without his or her permission. Report new side effects to your health-care provider. He or she may adjust your dose, prescribe a different medicine or make other changes. Always carry a list of your medicines with you. This can help health-care professionals in an emergency. Keep track of your medicines - keeping a written record of Vasodilators your medicines, including vitamins and over-the-counter drugs, will also help you remember to take them on schedule. The charts on the next two pages will give you a good start. Purpose: To open up your arteries and make it easier for your heart to pump. Side effects: May include headache, low blood pressure, dizziness, nasal congestion, flushing and irregular heartbeat. Even if you are feeling better, take your medicine as prescribed! Don’t stop taking a medicine without talking to your health-care provider first. Changing the size of doses or skipping does can be dangerous. Aldosterone blockers Purpose: To block the effects of a hormone that can cause fluid buildup and high blood pressure. Side effects: May include headache, dizziness, enlarged breasts, irregular vaginal bleeding and high potassium levels. 3 This handbook is not able to list all the risks, benefits, side effects, and special precautions for each medication discussed. Patients (or guardians) should talk with their health-care provider about risks, benefits, side effects and special precautions for each medication prior to use. Use medications only as prescribed or directed by your health-care provider. Color and shape Instructions/times to take Now you’re ready to complete a medicine calendar or log. Medicine Name Purpose Side effects Start by “profiling” them. Complete the chart below. Doing so will help you become more familiar with your medicines, why you take them and what the possible side effects are. Track your medicines. 4 Medicines & Instructions 5 Monday Hours Taken Sunday Hours Taken Hours Taken Tuesday Hours Taken Wednesday Hours Taken Thursday Hours Taken Friday Hours Taken Saturday Don’t be hard on your heart. Your heart is under enough strain already. Help make your heart’s work easier by maintaining a healthy weight, keeping your blood pressure under control and reducing stress. Practice stress-reducing techniques to calm your mind and improve your overall health. Talk to your health-care provider about meditation, visualization, massage, breathing techniques, biofeedback, counseling, support groups and stress management courses. Volunteer activities, hobbies, taking classes, and exercising may also help reduce stress. Maintain a healthy weight. Being overweight increases your chances of having high blood pressure, diabetes, a heart attack and other problems. Ask your health-care provider about the best weight for you. If you need to lose weight, he or she can help you make a diet and exercise plan. My current weight is ______________. I should maintain a weight of ______________. Weight also plays a role in monitoring your health. In people with heart failure, weight gain isn’t always just a sign of eating too much. It can also be a sign that you’re retaining fluid from eating too much sodium or that your condition is getting worse. Use the chart to help keep track of your weight regularly. Maintain a healthy blood pressure. High blood pressure can lead to increased risk of stroke, heart attack and other health problems. Low blood pressure may be a side effect of some medicines. Ask your health-care provider what your blood pressure should be and how you can monitor it. My current blood pressure is __________. I should maintain a blood pressure of __________. 6 Are you gaining weight? A sudden gain in weight may mean that your body is retaining fluid or that your condition is worsening. As a result, tracking your weight is very important. Week of: Sunday Monday Tuesday Wednesday Thursday Friday Saturday Call your doctor if you gain ______ pounds or more in one day or ______ pounds or more in one week. 7 Stay away from sodium. Sodium makes the body retain fluid, making the heart work even harder. Salt is a huge source of sodium. Reducing sodium will help decrease excess fluid in your body. (Checking your weight will help you see if you’re retaining fluid. See page 7) Here are some popular foods and condiments that are very high in sodium. (Generally, foods with 140 mg or more of sodium per serving are considered high in sodium.) Check those that you eat. 424 Croissant Sodium content (in mg) 515 5 pretzels 616 Cheeseburger, fast food 662 Potato salad, 1/2 cup 739 Ham, 2 slices 821 Scalloped potatoes with butter, 1 cup 824 Tuna salad, 1 cup 833 1 dill pickle 850 Chicken noodle soup, 1 cup 902 Soy sauce, 1 Tbsp. 918 Cottage cheese, low-fat, 1 cup 1061 Macaroni and cheese, 1 cup 1114 Baked beans with franks, 1 cup 1203 Spaghetti with marinara sauce, 1 cup Ask your health-care provider what your daily limit for sodium should be. Note the foods you checked. You may have to avoid these foods and foods like them. But, there are delicious, lowsodium foods you can eat. I should limit sodium to _________ mg a day. 8 Try eating a healthier diet. Eating foods that are low in sodium will help you feel better. Here are some foods that are relatively low in sodium. (Generally, foods with less than 140 mg of sodium per serving are considered low in sodium.) Check those that you eat. 0Almonds, unsalted, 1 oz. Sodium content (in mg) <1Cooked oatmeal or pasta, unsalted, 1/2 cup <1Apple, 1 medium 1 Romaine lettuce, 1 leaf 1 Banana, 1 medium 4 Applesauce, sweetened, 1/2 cup 6 1 tomato 20 Potato, with skin, baked 32 Broccoli, boiled or steamed, 1/2 cup 64 Baby carrots, 8 medium 74 Fresh haddock, 3 oz. 90 Fresh beef, chicken or pork, 3 oz. 103 Milk, fat-free, 1 cup 133 Bread, wheat, 1 slice Note: The exact sodium amount in foods can vary by product. Be sure to read the label carefully. Note the foods you checked. To eat less sodium, you should replace high-sodium foods with foods on this list and foods like them. See page 10 for some tips. 9 Lower sodium intake. Remove the salt shaker from your table. You The Percent Daily Value column can help you make low-sodium choices. It shows whether a will be less likely to use it. serving is high or low in sodium: 20% Daily Value or more is high in sodium, while 5% or less is low. Use herbs and other seasonings instead of salt to flavor food. Garlic, oregano, basil, curry, lemon juice, rosemary, or parsley are great substitutes. Avoid salted crackers. Snack on fresh vegetables and fruits. Eat a variety of fresh and frozen vegetables instead of canned vegetables. Eat fresh fish, poultry, and meat instead of canned or processed meats. Be sure to note the serving size listed on the package. Although a package looks small, it may contain more than one serving. Nutrition Facts Be careful with salt substitutes and spices that taste salty. They may contain other forms of salt that can be harmful. They may also contain potassium, which can significantly change your potassium level, especially if you take potassium supplements. Ask your health-care provider about safe substitutes. Serving Size 1 cup (228g) Servings Per Container 2 Amount Per Serving Calories 250 Calories from Fat 110 Total Fat 12g Saturated Fat 3g Trans Fat 1.5g Cholesterol 30mg Sodium 470mg Total Carbohydrate 31g Dietary Fiber 0g Sugars 5g Protein 5g Check the sodium content of foods. It’s listed on the label. Many frozen dinners, packaged mixes, canned soups and condiments are high in sodium. Many over-the-counter medicines contain sodium too. Ask your pharmacist about the sodium content of medicines you take. Vitamin A Vitamin C Calcium Iron Check out nutrition labels before purchasing food. With the exception of fresh fruits, vegetables, and meats, most foods have a nutrition label. % Daily Value* 18% 15% 10% 20% 10% 0% 4% 2% 20% 4% * Percent Daily Values are based on a 2,000 calorie diet. Your Daily Values may be higher or lower depending on your calorie needs: Calories: 2,000 2,500 Total Fat Less than 65g 80g Sat Fat Less than 20g 25g Cholesterol Less than 300mg 300mg Sodium Less than 2,400mg 2,400mg Total Carbohydrate 300g 375g Dietary Fiber 25g 30g The amount of sodium a product contains is listed on the label. Some products are also labeled “sodium or salt free”, “reduced sodium”, or “no-salt added.” Choose your foods by comparing nutrition labels. SOURCE: U.S. Food and Drug Administration/U.S. Department of Health and Human Services. 10 Make other changes too! If you smoke, quit. Smoking narrows blood Avoid alcohol. Alcohol can slow your heart rate vessels, making it harder to breathe. This increases your blood pressure and heart rate, thus increasing your risk of developing other heart and health problems. Don’t wait - quit now! and worsen heart failure. It may also interact with the medicines you take. Reduce caffeine intake. Caffeine increases your heart rate and could cause irregular heartbeat. Watch your fluid intake. Drinking too many Eat less fat and cholesterol. Diets high in fat and liquids may force your heart to work harder. Therefore, your health-care provider may set a limit on the amount of fluids you can have. To keep your mouth from getting dry, suck on some hard candy or use a humidifier. cholesterol can lead to more heart problems. Eat more fruits and vegetables and talk to your health-care provider for specific guidelines. Ask before you drink grapefruit juice. It may interact with some of your medicines. 11 Should I exercise? Studies have shown that exercise has many benefits for people with heart failure. Involve friends or family in your activities you’ll be more likely to stick with your exercise program. It can help: • improve the flow of blood through your body • strengthen your heart and body • tone your muscles • increase your energy level • manage stress • raise your spirits Don’t overdo it. Exercising and staying active are important. Keep in mind, though, that you won’t be able to do as much as you once did. Set realistic goals and take breaks periodically. Stop exercising immediately and rest, no matter Exercise does not mean you have to buy expensive equipment or join a health club. It can be as easy as walking regularly. Be sure to warm up and cool down. what you are doing, if you: • feel tired • have chest pain • are very short of breath See your health-care provider before starting an exercise program. Your health-care provider Call your health-care provider if these symptoms don’t go away. can help you develop an exercise plan based on your level of fitness. Your program may include a variety of aerobic activities such as walking, swimming, cycling, or low impact aerobics. Strength training may also be recommended. Watch the weather. Try not to exercise outdoors if it is too cold, hot or humid. It can interfere with your circulation, make breathing more difficult, or cause chest pain. Ask questions about your exercise program. • • • • • • How often should I exercise? What kind of exercise should I do? Are there any activities I shouldn’t do? How long should I exercise? Do I need special equipment or clothes? Should I check my pulse? 12 How to prevent swelling and infections. Swelling of the feet, ankles and legs, known as edema, is common in those with heart failure. It is caused when excess fluid builds up in one part of the body. Sadly, heart failure can make you more likely to get pneumonia and other illnesses. But, there are things you can do to reduce the risk. In addition to consuming less salt and taking certain medicines, there are several other steps you can take to help reduce swelling. Stay healthy by: 1. getting flu and pneumonia shots (check with your health-care provider) 2. washing your hands frequently 3. staying away from people who have respiratory infections or who are ill 4. avoiding large crowds Elevate your legs: Lying down or sitting with your legs raised will help drain the fluid away from your legs. However, this is only a temporary measure because the fluid is just moving from one area to another. Be sure to get plenty of rest. To increase your chances of staying healthy you should: Walk on a regular basis: Walking will help increase circulation and tone muscles. If you are bedridden, flex your leg muscles, move your feet in circles and wiggle your toes to help circulation. 1. Plan at least one rest period every day. 2. Rest between periods of heavy activity. Alternate light and heavy activities. 3. Avoid working long days. 4. Consider a short nap after lunch (long naps may make it difficult to sleep at night). Wear special elastic stockings: These stockings can keep fluid from collecting in your legs. In general, they should reach above your knees because shorter ones may not eliminate swelling. They should be fitted for you and adjusted as the swelling goes down. Your health-care provider can help decide the proper type for you. When you rest, raise your legs to help keep any swelling down. 13 Support groups can help, also! Talking to family and friends can help, but there is nothing like talking to another person who has the same problems as you. So, ask your hospital, health-care provider or area agency on aging about support groups close to you, and join one! You are not alone. Support groups give you and your family an opportunity to talk about your condition and any problems you’re having with others who suffer from heart failure. Sharing common problems can give you more confidence and make everyone feel better. Help others. If there isn’t a support group near you, start one. It could be a wonderful source of comfort to others with heart failure. For more information, talk to your health-care provider or contact: The Mended Hearts, Inc. www.mendedhearts.org 1-888-HEART-99 (1-888-432-7899). You can also call the American Heart Association and ask for Mended Hearts. Other sources of help The American Heart Association www.americanheart.org 1-800-AHA-USA-1 (1-800-242-8721) The National Heart, Lung, and Blood Institute Information Center www.nhlbi.nih.gov 1-800-575-WELL (1-800-575-9355) 1-301-592-8573 14 Discharge Preparation Checklist Before I leave the care facility, the following tasks should be completed: ፬ ፬ ፬ ፬ ፬ ፬ ፬ ፬ ፬ ፬ I have been involved in decisions about what will take place after I leave the facility. I understand where I am going after I leave this facility and what will happen to me once I arrive. I have the mane and phone number of a person I should contact if a problem arises during my transfer. I understand what my medications are, how to obtain them and how to take them. I understand the potential side effects of my medications and whom I should call if I experience them. I understand what symptoms I need to watch out for and whom to call should I notice them. I understand how to keep my health problems from becoming worse. My doctor or nurse has answered my most important questions prior to leaving the facility. My family or someone close to me knows that I am coming home and what I will need once I leave the facility. If I am going directly home, I have a scheduled follow-up appointment with my doctor, and I have transportation to this appointment This tool was developed by Dr. Eric Coleman, UCHSC, HCPR, with funding from the John A Hartford Foundation and the Robert Wood Johnson Foundation. 15 GO SYMPTOMS: ♥ Breathing is easy ♥ Weight is on target ♥ Little or no swelling WHAT TO DO: Great Job! ♥ Keep taking your medicine ♥ Keep watching your diet and weight ♥ Keep exercising SYMPTOMS: ♥ Hard to breathe with activity or at night ♥ Weight is up 3-5 pounds ♥ Swelling in ankles, legs, or belly ♥ Chest feels heavy or tight, but gets better with rest ♥ Very tired WHAT TO DO: ♥ Call your doctor or nurse ♥ Change your medicine if directed by your doctor. ♥ Other instructions: SYMPTOMS: ♥ Hard to breathe even at rest ♥ Chest pain or chest feels very heavy or tight ♥ Sweating, weakness, or fainting ♥ _______________________ ♥ _______________________ WHAT TO DO: ♥ Medical Alert - Get help NOW! ♥ Call 911 for emergency help ♥ Do not try to treat this yourself Green - You feel well. Caution Yellow - You do not feel well. ALERT RED - You need medical help NOW! 16