Living with Heart Failure Title Case

Patient and Family Education intermountainhealthcare.org/heartfailure

A new role to play

Having heart failure doesn’t mean that you can’t live a full and rewarding life. But it does mean that you need to play an active role in taking care of yourself. This guide will help.

2 LIVING WITH HEART FAILURE What’s Inside: INTRODUCTION If you’ve been diagnosed with Understanding heart failure...... 4 heart failure, you’re not alone. How does a healthy heart work?...... 4 Nearly 6 million people in the What happens with heart failure?...... 5 U.S. have this condition, with What are the causes of heart failure?...... 6 about 550,000 new cases diagnosed every year. Heart What are the symptoms of heart failure?...... 7 failure can occur in people of any age, but is most common Diagnostic tests...... 8 in older people. It’s the leading Initial assessment...... 8 cause of hospitalization in Further assessment...... 8 people over age 65. Your care team...... 9 Although heart failure is a serious condition, there’s a lot Treatment...... 10 you can do to manage your What your healthcare providers can do...... 10 condition and lead a satisfying and productive life. What you can do...... 11 This guide will help you Lifestyle management...... 12 understand your condition and Take your medications...... 12 what you can expect from your medical treatment. It will also Stay Active each day...... 15 help you see what you can do Weigh yourself each day...... 18 to improve your health now Follow your Diet...... 20 and in the future.

Recognize your Symptoms...... 27 You can also watch a DVD with this information — see Facing your future...... 28 page 30 for resources. Accepting your diagnosis...... 28 Understanding the stages of heart failure...... 29 Preventing hospitalization...... 29 Reach out for support!...... 30 Resources...... 30

Heart failure action plan...... 31

LIVING WITH HEART FAILURE 3 Understanding Heart Failure

Your treatment plan will make more sense to you if you have a good understanding of what happens when you have heart failure. But first, it helps to know how a healthy heart works. How does a healthy heart work? Your heart’s job is to pump blood — rich in oxygen and nutrients — to all parts of your body. The figure below shows how this happens.

The four pumping chambers of the heart

1. Veins return oxygen- poor blood from the body to the right 3. When oxygen-rich atrium of the heart. blood returns to the heart from the lungs, 2. From there, the blood it is received by the enters the right left atrium. ventricle, which pumps the blood to the lungs 4. It then enters the left to get a fresh supply ventricle, which pumps of oxygen. the blood out to all parts of the body.

1. right atrium

3. left atrium

2. right ventricle 4. left ventricle

Your hard-working heart Your heart is a hard-working muscle. On average, it beats 60 to 100 times each minute, every day of your life. Each beat pumps blood to all parts of your body. By the time you’re 70 years old, your heart will have pumped almost 50 million gallons of blood — quite a feat for an organ about the size of your fist!

4 LIVING WITH HEART FAILURE What happens with heart failure? Poor squeeze vs. When you have heart failure, your heart can’t pump enough blood to Poor relaxation meet your body’s needs. This happens because your heart is weakened Heart failure occurs for by conditions or diseases that damage the heart muscle. Most of these two different reasons: conditions weaken your heart little by little, over a period of time. • In some cases, heart Here’s a summary of how heart failure can develop and progress. failure occurs because your heart isn’t pumping 1 The heart muscle is weakened by conditions or diseases that effectively — you have damage your heart. (These are described on the next page.) “poor squeeze.” Your 2 The heart’s pumping action becomes less efficient. healthcare team may call this systolic heart failure 3 The body tries to make up for the heart’s reduced pumping or heart failure with action in these ways: reduced EF. (See page 9 for more about EF.) • Hormonal stimulation to the heart increases. • In other cases, the heart • The heart beats faster. can still pump effectively — • The heart enlarges. (Heart chambers stretch and get bigger, but the muscle walls have and the muscle mass may increase in size.) stiffened, which prevents the heart from fully 4 For a time, these adaptations will help continue normal or near-normal relaxing and filling with heart function. But sooner or later, these adjustments can actually enough blood between make matters worse by putting extra strain on your heart. contractions. Your healthcare team may call 5 Eventually the muscle will begin to wear out and become even less this diastolic heart failure Heart failure efficient at pumping the blood your body needs. or heart failure with symptoms — such as shortness of breath, cough, fatigue, and fluid preserved EF. buildup — may begin or worsen. With both types of heart failure, your heart can’t pump enough blood. This can interfere with the function to compensate... of other major organs, and produce a range of symptoms throughout your body.

heart muscle begins to wear out

LIVING WITH HEART FAILURE 5 Why is it What are the causes of heart failure? sometimes called... Heart muscle damage of any type weakens the heart muscle and can lead to Cardiomyopathy? heart failure. The most common causes of heart muscle damage (often called Cardiomyopathy means heart cardiomyopathy) in the U.S. are listed below. muscle disease. Heart muscle disease from various causes • Atherosclerosis (coronary artery disease, CAD). In many people can lead to heart failure. with heart failure, the arteries that supply the heart with blood are narrowed or clogged. This condition is called atherosclerosis, or coronary

artery disease (CAD). CAD reduces the amount of oxygen your heart cardio = heart receives and weakens the muscle. It can also cause a heart attack (called myo = muscle myocardial infarction MI pathy = disease , or ) that leaves scar tissue on your heart. Unlike normal heart muscle, scar tissue doesn’t contract so your heart may pump

less effectively. Heart muscle damage that results from CAD is typically called ischemic cardiomyopathy.

• High blood pressure (hypertension). Long-term, poorly controlled Congestive heart failure? high blood pressure makes your heart work harder to pump blood through your body. This is because high blood pressure increases the resistance Your healthcare providers may refer to your condition your heart must pump against. Over time, all that extra work can wear out as “congestive heart your heart and lead to heart failure. Heart muscle damage that is caused failure.” By adding the term by high blood pressure is often called hypertensive cardiomyopathy. “congestive,” they’re referring to the buildup of fluid (the • Heart valve problems. Heart valves control the direction of blood congestion) that may occur flow through your heart. When they’re damaged, they often don’t open with heart failure. This can and close properly. This leads to backflow of blood or limits the forward cause symptoms like swelling flow of blood. Congenital defects (defects present at birth) and infections and water weight gain. such as rheumatic fever can cause heart valve problems that interfere with your heart’s ability to pump blood effectively. This is called valvular cardiomyopathy.

• Alcohol abuse. Chronic, excessive alcohol intake can severely weaken the muscle walls of the heart. This problem is called alcohol-related heart failure, or alcoholic cardiomyopathy.

• Drugs. Illegal drugs such as cocaine or amphetamines can damage the heart. Misuse of some prescription medications can also cause heart failure. And rarely, some cancer treatments can damage the heart. In these cases, the problem may be called drug-induced cardiomyopathy.

• Unknown causes. Sometimes the cause for heart failure is unknown. If tests and examinations cannot find a specific cause for the weakening of your heart, your healthcare providers will say that you have idiopathic cardiomyopathy.

6 LIVING WITH HEART FAILURE What are the symptoms of heart failure? You could have Your heart failure symptoms are due to either fluid buildup or lack of right-sided heart failure, oxygen in your tissues. You may notice some — or all — of these heart left-sided heart failure, failure symptoms: or both.

• Shortness of breath. You may experience shortness of breath at any time. This is due to the fluid buildup in your lungs, which makes breathing harder. This breathing difficulty tends to occur first during physical activity — and may also occur at night when you’re lying flat. Right-sided heart • Cough. Many people with heart failure complain of a frequent cough. failure Sometimes this cough is dry and hacking, and other times it produces When the right side of the phlegm. For some, this cough occurs primarily at night. For others, it can heart isn’t pumping effectively, last all day. Like shortness of breath, this cough is likely a side effect of the blood returning to the fluid buildup in your lungs, especially if your phlegm is pink-tinged. heart from the body backs up in the veins. When blood backs • Excessive fatigue. When your heart can’t pump enough blood to meet up in the veins, excess fluid in your body’s needs, you’re bound to feel more tired than usual. You may the blood leaks out into the also feel weak. Your muscles and organs simply aren’t getting the blood surrounding tissues. This can cause: they need, and even a good night’s sleep won’t help. • Swelling in the liver • Weight gain. Weight gain may be one of the earliest signs of fluid • Bloating in the buildup in your body. Extra fluid in your body translates into extra weight stomach showing up on your scale — at a rate of about 2 pounds for each quart of • Swelling in the additional body fluid. For this reason, keeping track of your weight is an legs and ankles important measure of your heart failure management.

• Swollen ankles, feet, belly, lower back, and fingers. Fluid buildup will show up as swelling in different parts of your body. The ankles, feet, belly, lower back, and fingers are places where extra fluid is most likely to collect as it seeps out of blood vessels into your tissues. Left-sided Swelling in your belly can cause you to feel bloated or nauseated, and can heart decrease your appetite. Swelling is usually worse at the end of the day. failure

• Poor concentration and memory lapses. Some people with heart When the left side of the failure complain of difficulty concentrating and lapses in memory. These heart isn’t pumping effectively, blood backs up, causing fluid symptoms may be explained by less oxygen being delivered to the brain. accumulation in the lungs. This can cause: • Shortness of breath • Cough • Fatigue and weakness

LIVING WITH HEART FAILURE 7 Diagnostic Tests

Heart failure can range from mild to severe. Although your symptoms provide one measure of your condition, they don’t always tell the whole story. Your healthcare providers will want to do other tests to assess the nature and degree of your heart failure. This will help them determine a treatment plan that suits your specific condition. Initial assessment To determine whether or not you have heart failure, your healthcare providers will first ask you about your medical history, your family history, your symptoms, and your health in general. They will also perform a physical examination of your entire body, head to toe. History is important Further assessment As part of diagnosing your After learning your health history and performing a physical examination, condition, your healthcare provider will take a health your healthcare providers may recommend additional tests to measure history. He or she will ask your heart function and determine the cause of your heart failure. During you questions about your treatment, some tests might be repeated at various time intervals to check symptoms and habits, other your response to treatment. Some of these tests are described below. conditions and treatments, and whether members of • Blood tests. Blood tests can assess a variety of health factors. These your family have had include your red blood cell count and level of electrolytes (important heart problems. elements like sodium and potassium). Blood tests can also check the function of your kidneys, liver, and thyroid. In some instances, blood tests Although you might find these questions tiresome, can identify the cause of your heart failure. it’s important to answer them • Urinalysis. Studying a sample of your urine will help detect any problems as accurately and completely with your kidneys or bladder that may be contributing to your heart failure. as you can. The information you provide helps your • Chest x-ray. An x-ray image of your chest shows the size of your heart healthcare providers assess and can help determine the presence of fluid buildup in your lungs. your condition and determine an appropriate treatment. • EKG (ECG, electrocardiogram). This test records the electrical activity of your heart and displays it on a screen for your healthcare providers to study. The procedure involves placing electrical wires with patches on your chest, arms, and legs.

Electrical checkup Your heart muscle pumps because of a system of electrical impulses throughout your heart. Heart failure sometimes changes this system, causing heart rhythm problems. Tests like the EKG and stress test are good ways to measure your heart rhythm and its effect on your condition.

8 LIVING WITH HEART FAILURE • Echocardiogram (echo) — the easiest way to assess the heart’s Heart action function. An echo test uses sound waves (ultrasound) to create an image as a fraction of the structure and movement of your heart. It shows your healthcare Your heart’s pumping ability is providers how well your heart is pumping. It also looks at your heart often assessed using a measure valves and the size of your heart. called an ejection fraction (EF).

• Other tests to assess how well your heart is working: Ejection fraction is the percentage of blood in the –– Imaging tests. A variety of imaging tests involve injecting a special heart’s pumping chamber that substance into your bloodstream and then taking x-rays. The images is pumped out (or ejected) with show blood flow and the heart’s structure and movement. This helps each beat. your providers see how well your heart is pumping. While ejection fraction can be –– Cardiac MRI (magnetic resonance imaging). This test uses radio measured for either the right waves and strong magnets to create images of your beating heart and ventricle or the left ventricle, in blood vessels. While you lie on an exam table surrounded by a large most cases this term refers to magnet, the test creates many images that are combined to create left ventricle ejection fraction. detailed pictures or movies. In a healthy heart, the left –– Right heart catheterization. In this test, a long, thin tube (a catheter) ventricle pumps out 55% is inserted into a blood vessel, usually in the neck or groin. It is directed to 75% of its blood with each into the heart, where the catheter can check pressures in the heart and beat. People with systolic heart failure usually have a lower in the artery that leads to the lungs. The catheter can also measure heart ejection fraction. output and blood oxygen levels.

• Other tests for coronary artery disease. These tests check for narrowing or clogging in the vessels that supply blood to the heart muscle: –– Angiogram. In this test, a catheter is inserted into a blood vessel (usually in the groin area), and threaded through the vessel to the heart. A dye is injected through the catheter and special x-rays can track the flow of blood to your heart muscle. –– Stress test. This test shows your heart’s response to stress. Your heart is stressed by exercise (on a treadmill or stationary bike) or by medication. During this period of stress, your healthcare provider checks your vital signs and monitors your heart’s response using an EKG and other images.

LIVING WITH HEART FAILURE 9 Treatment

Heart failure is a chronic condition that in most cases cannot be cured. The good news is that heart failure CAN be managed and treated. The goals of heart failure treatment are to ease the workload on the heart, prevent further damage, and, if possible, improve your heart’s function. For the best Your care team outcomes, you and your healthcare providers need to work together. Many people will work together to diagnose and treat What your healthcare providers can do your heart failure — and help you live better. Your healthcare providers’ will diagnose, monitor, and treat your heart failure. • Your primary care provider. They will also support you with your self-care plan. This is the person you usually see for health Diagnose and treat heart failure problems. He or she could be a family practice Your healthcare providers will diagnose your heart failure, monitor your physician, general internist, symptoms, and create a treatment plan for you. They may refer you and your nurse practitioner, or family to a class or support group focused on living with heart failure. physician assistant. • Your cardiologist. Prescribe and adjust medication This physician specializes in Nearly everyone with heart failure will take medication. The purpose of the diseases of the heart and medication is to lower the workload and strengthen the pumping action of blood vessels. your heart. Your team will check how well your medications are working and • Other heart specialists. how well your body tolerates them. They will make adjustments as needed. Other specialists may be involved, such as an electrophysiologist Perform medical procedures, as needed (who treats heart Some people benefit from surgery or other procedures. These procedures can: rhythm problems) or a cardiothoracic surgeon • Open or bypass coronary arteries. If your heart failure is caused (if you need heart surgery). by fatty plaque clogging your arteries, your healthcare provider may • Other healthcare recommend a procedure to open or bypass arteries. professionals. Many • others may contribute Repair or replace heart structures. Sometimes heart failure is caused to your care — such as by an abnormal heart valve or other structural problem. In this case, your physician assistants, nurse healthcare provider may suggest a procedure to repair it. practitioners, nurses, dietitians, pharmacists, • Implant cardiac devices. Your healthcare provider may advise a exercise physiologists, procedure to implant a pacemaker or other cardiac device. A device like care managers, and this can help address heart rhythm problems. social workers. • Replace or assist your heart. For severe, unresponsive heart failure • You and your family. that can’t be stabilized by other means, your healthcare provider may You and your family are at recommend heart transplant surgery or surgery to implant an assist device the center of this team! See the facing page for what (such as a left ventricular assist device, or LVAD). See page 30 for a link to you can do. the UTAH Cardiac Transplant Program and the Advanced Heart Failure Therapies Program at Intermountain Medical Center.

10 LIVING WITH HEART FAILURE Provide hospital treatment, as needed

O ur goal is to keep your heart failure as stable as possible, so you don't need to be treated in the hospital. However, you may need to be hospitalized to treat your heart failure at some point. If you’re hospitalized, your care will focus on removing excess fluid from your body. Before you leave the hospital, your team will take steps to help reduce your chance of having to return to the hospital. This will include:

• Information on your ejection fraction (EF) from your most recent A Family Affair echocardiogram. This is a key indicator of heart health. Support from family and friends • ACE-I, ARB, or other medications, as appropriate. can go a long way toward helping you manage your • Education on self-management for heart failure. (See below.) heart failure. It can also help • A follow-up appointment within 7–10 days. Be sure to keep this THEM — giving them a role to play and a sense of control. appointment, even if you’re feeling better. They can help by: • K eeping records and notes. W hat you can do Loved ones can help you keep activity and weight There are key parts of your treatment that are up to you. These include: records and write questions to ask your healthcare provider. Manage your lifestyle — using MAWDS • Exercising with you. Having Lifestyle management is so important that most of this booklet focuses on friends or family exercise this aspect of treatment. Intermountain’s plan for lifestyle management with you can help you stick to is called MAWDS. See pages 12 to 27 to learn how to use MAWDS to a schedule and maintain an appropriate activity level. manage your heart failure. MAWDS stands for: • Supporting you in heart- M Take your Medications healthy eating. Loved ones can help you eat properly by A Stay ACTIVE each day shopping for, cooking, and eating low-sodium foods W WEIGH yourself each day with you. Have a frank discussion D Follow your DIET with your loved ones about how they can help S Recognize your SYMPTOMS you improve your health. Another topic to discuss Monitor for changes daily is your advance directive. An advance directive is a Keep track of your symptoms in your MAWDS self-care diary — and document that expresses watch out for changes. Your providers can show you how to use this. your decisions for your healthcare, in case you Communicate with your healthcare providers can’t make or communicate them yourself. See Let your healthcare providers know if your condition changes. see page intermountainhealthcare. 31 to know when you should call in. It’s important to call before your org/directive to learn more. condition gets worse.

LIVING WITH HEART FAILURE 11 Lifestyle Management t To help you follow this plan, use your Heart This section of the book focuses on lifestyle management following a Failure Self- MAWDS plan, starting with medication. Care Diary daily. AWDS Medication

Take your medications

Your healthcare providers can prescribe your medications, but it’s up to you to take them properly. You also need to communicate with your healthcare providers about your medications. They need your feedback to understand how you’re responding to treatment and make any necessary adjustments.

Your medications are proven to help improve your quality and length of life. It’s vital that you take your medications exactly as prescribed. Missing a dose, or taking too much, can cause serious problems. In fact, not taking your medications as instructed is one of the most common reasons people with heart failure need to be hospitalized.

As you learn about Medication matters your medications, Research shows that medications can: write down any • Decrease symptoms and keep you instructions in your out of the hospital own words — and • Increase your tolerance for physical get your healthcare activity provider to double- • Improve your prognosis check your notes. If you can’t afford your medications, check with your healthcare provider or pharmacist. There may be less expensive forms to try or ways to help you get your medications.

12 LIVING WITH HEART FAILURE Tips for taking your medication safely and consistently AWDS • Make sure you know exactly how to take your medications. Always Medication ask healthcare providers about the following: –– When to take each medication –– How much to take –– If there are any special instructions, such as taking a pill with a meal or on an empty stomach –– Any side effects you may encounter

• Tell your healthcare providers about any other medications you’re taking. Your care team can help ensure there are no harmful interactions between drugs.

• Talk to your healthcare provider before taking any over-the- counter medications or other supplements. These can interact with your regular medications. Do not take any new substances — unless you first consult your healthcare providers. This includes pain relievers (such as aspirin, ibuprofen, and naproxen) and dietary supplements (including herbal, vitamin, and mineral supplements). • Write down what to do if you accidentally skip a dose. Everyone A shot never hurts forgets sometimes — so be prepared and talk with your healthcare provider about what you should do if you miss a dose of your medication. To help support your Don’t try to make up for a missed dose by taking 2 doses at once (unless treatment — and prevent you from getting sick — your healthcare provider specifically tells you to). your healthcare providers • Don’t skip a dose because you feel better. Most heart failure may recommend the medications must be taken regularly to keep you healthy. following: • • Develop a routine to take your medications. For example, you can An annual flu shot. Influenza vaccines can take your medications right after brushing your teeth in the morning, or help you avoid the year’s while watching the evening news. worst flu. • Set an alarm clock to remind you when it’s time to take your • A pneumococcal medications. Or, use an electronic medication reminder. vaccine. A “pneumovax” can help protect you from • Organize your pills. Use a divided pillbox for different times of the day, pneumonia, meningitis, or different days of the week. Some pillboxes even have a built-in alarm and other serious clock to remind you when to take your pills. infections. • When you have a week of medications left, order more. Pharmacies Studies have shown that sometimes have a delay in filling orders, and it’s important to avoid running out both vaccines are very safe of your prescription. Consider signing up for auto-refill for your medications. and effective. • Carry a card. Keep a written list of all your medications and dosages in your wallet or purse. Keep a list of any medical allergies with this list.

LIVING WITH HEART FAILURE 13 Medication Examples The table below lists a few examples of each medication type, what they do, and possible side effects. (Generic names are in lower case and brand names start with a capital letter — your doctor will prescribe generics when appropriate.) Severe side effects are rare — call your provider right away if you have a severe side effect.

Type Examples What they do SIDE EFFECTS ACE inhibitors ACE inhibitors: captopril (Capoten), Block stress hormones and • Common: Dry cough (ACE or Angiotensin enalapril (Vasotec), fosinopril decrease the pressure in blood inhibitors), dizziness, headache II receptor (Monopril), lisinopril (Prinivil, Zestril), vessels, so it's easier for the heart • Severe: Swollen tongue antagonists quinapril (Accupril), ramipril (Altace) to push blood forward. or lips, kidney dysfunction (ARBs) ARBs: candesartan (Atacand), losartan (Cozaar), valsartan (Diovan)

Alternative hydralazine (Apresoline), isosorbide Decrease the pressure in blood • Common: Headaches, fast vasodilators mononitrate (Imdur, ISMO, Monoket), vessels. heartbeat, dizziness, swollen feet isosorbide dinitrate (Isordil Titradose, or ankles Dilatrate-SR), hydralazine/isosorbide • Severe: Severe tiredness, serious dinitrate (BiDil) rash, chest pain Aldosterone spironolactone (Aldactone), Help rid the body of excess fluids • Common: Upset stomach, diarrhea, receptor eplerenone (Inspra) and prevent loss of electrolytes. breast pain (spironolactone) antagonists Improve survival rates and reduce • Severe: Trouble breathing, rash, risk of hospitalization. swollen tongue or lips Beta bisoprolol (Zebeta), carvedilol (Coreg, Relieve stress on the heart, • Common: Dizziness, fatigue blockers Coreg CR), metoprolol succinate improve heart function, reduce • Severe: Large rash, masked signs (Toprol XL) symptoms, prevent hospitalization, of low blood glucose in diabetes, and improve survival rates. worsening of asthma or COPD Diuretics bumetanide (Bumex), furosemide Help rid the body of excess • Common: Increased urinary (“water pills”) (Lasix), metolazone (Zaroxolyn), fluid — an important part of frequency, upset stomach, torsemide (Demadex) easing heart failure symptoms. dizziness • Severe: Large rash, kidney dysfunction Mineral magnesium oxide, potassium (K-Dur, Replace potassium or magnesium • Common: Upset stomach, diarrhea supplements K-tab, K-Lyte, Micro K, Slow K, that may be lost with diuretics. Klor-con) Digitalis digoxin (Lanoxin) Helps irregular heart rhythms • Common: Upset stomach, nausea/ and also helps improve exercise vomiting, headache, dizziness tolerance a bit. Reduce risk of • Severe: Confusion, irregular hospitalization. heartbeat, mental disturbance

Anticoagulants heparin, warfarin (Coumadin), Help prevent blood clots from • Common: Minor bleeding (gums, (“blood enoxaparin (Lovenox), apixaban forming or getting larger. nosebleeds, bruising), upset thinners”) (Eliquis), rivaroxaban (Xarelto), stomach, nausea/vomiting dabigatran (Pradaxa) • Severe: Major bleeding (a sign is black tarry stools) Inotropes dobutamine (Dobutrex), milrinone Strengthen the heart’s pumping • Common: Headache, tremors, (Primacor) action. Started in the hospital with fever, easy bruising, fast heartbeat, an IV, inotropes are usually used irregular heartbeat to treat severe symptoms. • Severe: Chest pain, dizziness, difficulty breathing, weakness

YOUR MEDICATION NOTES AND QUESTIONS

14 LIVING WITH HEART FAILURE Weigh yourself each day

Follow your Diet

Recognize your symptoms

M WDS Starting up activity Don’t get discouraged if you find you can only be active for a short period of time. Some people can only exercise 5 minutes a day at first. The important thing is to start your activity plan and stick to it. You can build up your activity level slowly over time. Stay active each day People with heart failure often have a lot of questions about the safety and benefits of physical activity. This section provides some basic guidelines. The best reason Benefits of exercise to exercise? Even though you have heart failure, you CAN enjoy physical activity and You’ll feel better! Need more exercise. In fact, you SHOULD stay active. A little exercise can make a big reasons? Research shows that difference in your health. Here are a few of the benefits you can expect heart failure patients who follow approved exercise from regular activity: plans strengthen their hearts, • Increased energy have fewer hospital visits, and enjoy better outcomes. • Better sleep at night • Stronger muscles, so everyday tasks aren’t as tiring • Help in maintaining your weight (or losing weight if needed) • Improved mood and outlook • Improved heart function

The “best” exercise plan The best exercise plan is one that is tailored to your current health, habits, and interests. Make sure to speak with your healthcare providers before starting any activity or exercise plan. They can help you find an exercise level that’s right for you. They may also tell you whether to avoid certain types of exercises.

Starting in early 2014, the Center for Medicare and Medicaid Services started paying for cardiac rehabilitation in patients with ejection fraction (EF) of less than 35%. Ask your healthcare provider if you qualify.

LIVING WITH HEART FAILURE 15 M WDS Activity Most people can choose from a range of safe activities and exercises. Daily walking, swimming, and biking are all great forms of exercise, and you can perform these activities at different levels of intensity to match your fitness level. Yet whether it’s golfing or gardening, the key is picking activities that you enjoy. This way, you’re more likely to be consistent with your physical activity — and motivated to continue over the long term.

Keep in mind that regular activity is your goal, and you should start off slowly and increase the time and level of activity gradually. You’ll likely have good days and bad days, so you should listen to your body and learn your limits. Adjust your activities as needed.

Staying safe while exercising

What if you don’t really know your physical limits yet? How can you be sure you’re exercising safely?

First, you should follow your healthcare providers’ general guidelines about the amount and type of activity that’s right for you. Beyond that, you need to monitor your body’s reaction to activity. Make sure that you can carry on a conversation during exercise, and that you’re not exhausted the next day. Always include regular periods of rest in

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16 LIVING WITH HEART FAILURE M WDS Activity

Talk your walk A good guideline to ensure you’re exercising within your limits: make sure you can carry on a conversation during activity.

Stay clear from smoke! Smoking is dangerous, especially if you have heart disease. Not only can smoking speed the progression of heart disease, but it also puts extra strain on your already struggling heart and decreases the amount of oxygen in your blood. Even second-hand smoke can have these effects. Safe sex? • If YOU smoke, QUIT! Ask your healthcare People with heart failure often provider for information and resources on quitting wonder whether — and smoking — such as Intermountain’s booklet when — they can safely Quitting Tobacco: Your Journey to Freedom. resume sexual activity. Healthcare providers believe For more information, visit that you can have sex as soon intermountainhealthcare.org/prevention, as you feel able. The physical or call the Tobacco Quit Line at 1-888-567-TRUTH. effort of sexual activity is • Keep your home smoke-free. It may seem comparable to walking up two awkward at first to tell people not to smoke in your flights of stairs at a moderate home. Help them understand that it’s for the sake of pace. (Most people agree that the stairs are less fun!) your health. If they must smoke, ask them to do so outside.

LIVING WITH HEART FAILURE 17 MA DS weight

Mon Weigh yourself each day weight: 23 14 6 Every morning when you wake up, you can take one of the most important HR: steps toward controlling your heart failure symptoms: stepping on your

BP: scale. Weighing yourself daily and keeping a record will help you and your

healthcare providers know if your heart failure is under control. Rapid changes in your weight can mean you are gaining or losing fluid. Write down your daily weight faithfully and Your weight and your heart accurately. You want a detailed record of your body As you learned from the first section of this guide, heart failure causes fluid weight pattern, not just a buildup in your body. This fluid shows up as extra weight on your scale. general idea. Generally speaking, the more severe your heart failure, the more fluid buildup in your tissues. An increase in your weight could mean a downturn in the condition of your heart. For this reason, you need to monitor your daily weight as a measure of your heart’s health.

My target weight: ______Month: ______Sun Mon Tue Wed Thu Fri Sat weight: weight: weight: weight: weight: weight: weight:

_ _ _ _ _ t _ _ Use the Heart Failure Self-Care Diary daily HR: HR: HR: HR: HR: HR: HR: ______BP: BP: BP: BP: BP: BP: BP: ______weight: weight: weight: weight: weight: weight: weight:

______HR: HR: HR: HR: HR: HR: HR: ______BP: BP: BP: BP: BP: BP: BP: ______weight: weight: weight: weight: weight: weight: weight: 1 At the beginning of a new month, write in your target ______HR: HR: HR: HR: HR: HR: HR: ______BP: BP: BP: BP: BP: BP: BP: weight and the month at the top of the page. ______

weight: weight: weight: weight: weight: weight: weight:

______HR: HR: HR: HR: HR: HR: HR: ______BP: BP: BP: BP: BP: BP: BP: ______Mon weight: weight: weight: weight: weight: weight: weight: ______2 Write in the day of HR: HR: HR: HR: HR: HR: HR: ______BP: BP: BP: BP: BP: BP: BP: the month in the weight: ______12 4 Each day record square in each box. 23 146 your weight. Your healthcare providers 3 Put a check in the 3 HR: 5 Record your can help you determine your zone you are in 79 target weight. Your target for the day heart rate. BP: weight is how much you (see page 31). Record your 120 80 6 weigh when you’re NOT blood pressure. retaining fluid.

18 LIVING WITH HEART FAILURE MA DS Is there a right way to weigh myself? Weight Although weighing yourself is as simple as stepping on the scale, there are a few things you can do to ensure that your daily record is accurate and complete:

• Use the same scale every day.

• Weigh yourself at the same time every morning — after urinating When you’re but before eating or drinking. gaining… • Weigh yourself when you’re dry, not wet from a shower or bath. An increase in your weight means either of these • Write down your daily weight faithfully and accurately — you want a conditions: detailed record of your weight pattern, not just a general idea. Use your Intermountain Heart Failure Self-Care Diary, and take it with you to • You’re gaining weight in fluids your healthcare appointments. Ask your healthcare provider for a copy. • You’re gaining weight When should I call my healthcare in fat provider about my weight? Fat weight gain happens more slowly than fluid weight gain. Call your healthcare provider if you see either of these weight-gain Talk with your healthcare warning signs: provider to determine why you’re gaining weight — and • You gain 2 or more pounds in one day whether it warrants a change • You gain 5 pounds over your target weight in your treatment plan.

These signs could mean that your body is retaining fluid, and may warrant a change in your treatment plan. You should also call if you have any questions about your target weight, or any other aspect of your management plan. When you’re losing… A decrease in your weight may mean you’re dehydrated.

Consult with your healthcare providers to determine why you’re losing weight — and whether it warrants a change to your treatment plan.

LIVING WITH HEART FAILURE 19 MAW S DIET

Healthy additions Follow your diet At the same time that you’re limiting salt, fluids, and alcohol When you’re diagnosed with heart failure, you’ll need to make 3 important in your diet, you can be adding adjustments to your diet: healthy foods for balance. This means eating moderate amounts of the following: 1 Salt • Fresh and dried fruits and Lose your salt shaker! Consume vegetables less than 2 grams (2,000 mg) • Low-fat, low-salt cheeses per day. • Cooking oils such as olive, canola, and safflower oil • Fresh fish, chicken, and turkey 2 Fluids • Lean cuts of beef, veal, Limit your intake to less than pork, and lamb 8 cups (64 ounces, or 2 liters) per day. • Breads, cereal, grain, and other starches (potatoes, pasta)

3 Alcohol Generally, avoid alcohol — special plans for especially if it caused your heart special conditions failure. If you do drink alcohol, limit it to one beer, cocktail, or If you have other health glass of wine each day. conditions such as diabetes or chronic kidney disease you may need a special eating plan. You may also need to make other adjustments in the way you eat and drink. Meet with a dietitian for These adjustments can ease your heart’s workload and help you feel better. details and for advice. A care provider or dietitian can give you specific guidelines and suggestions.

20 LIVING WITH HEART FAILURE MAW S 1 Limit salt in your diet DIET

Most healthcare providers will recommend that you eat less than 2,000 mg of salt (sodium) per day. To meet this goal, you’ll need to follow a low-salt (low-sodium) diet. In addition to following the guidelines given by your healthcare providers, you should develop the following habits as part of your The salt connection low-salt diet: In a person with a healthy • Take the salt shaker off the table. If it’s not there, you can’t use it! heart, salt intake is balanced by elimination • Substitute other spices for salt in your cooking. Try these (urination). But when your flavor enhancers: allspice, dill, lemon, onion, curry, pepper, and garlic heart is weakened, your body has trouble ridding itself of powder (not garlic salt). If you want to try salt substitutes, ask your excess salt. Excess salt can healthcare providers which are safest. cause problems for your heart:

• Substitute fresh or frozen vegetables for canned foods. • Water (fluid) retention. Canned foods often contain salt. Fluid retention can cause shortness of breath and • Rinse canned foods for 30 seconds. If you can’t substitute fresh or swollen hands and feet. frozen vegetables, you can still reduce the salt content by a third if you In this case, your heart first rinse canned food with water. has to work extra hard to pump the excess fluid. • Avoid processed meats. Foods such as hot dogs, salami, bacon, and other lunch meats usually contain a lot of salt. • Increased blood pressure. This also means more work • Stay away from salty snacks such as potato chips, salted nuts, for your heart. and pretzels.

• Cut out headache or heartburn medicines that contain salt in the form of sodium bicarbonate or sodium carbonate. (The labels will tell Triple trouble you whether sodium is an ingredient.) The average American consumes about 6,000 mg • Choose foods labeled “unsalted,” “no salt added,” or “low of salt a day — three times sodium.” You’ll be pleasantly surprised that many of your favorite the amount recommended foods also come in low-salt versions. by experts!

• Take time to read and compare food labels.

• Ask that your food be prepared with less salt (or no salt) when eating out.

Use flavor enhancers, such as lemon or onion, as a replacement for salt.

LIVING WITH HEART FAILURE 21 MAW S 2 Limit your fluid intake DIET Another way to reduce the fluid retention caused by your heart failure is to drink less fluid — only 8 cups a day (64 ounces, or about 2 liters). Keep in mind that feeling thirsty doesn’t mean your body needs more fluid. Instead of drinking fluids when you’re thirsty, try these:

• Chewing gum FACT SHEET FOR PATIENTS AND FAMILIES

Heart Failure Fluid Tracker

• If you have heart failure, one key to managing it is Sucking on ice chips or hard candy restricting sodium (salt) and limiting fluids, as part Common amounts Ounces mL of a heart failure diet. Limiting fluids can ease edema (swelling) and lighten the workload on your heart. 2 tablespoons 1 oz. 30 mL Generally, limit your fluid intake to 2 liters (2,000 mL) 1 small juice glass 4 oz. 120 mL per day. (Check with your healthcare provider to be sure.) 1 cup 8 oz. 240 mL Use the tracker on the other side of this handout 1 cup of ice chips 4 oz. 120 mL to monitor how much fluid you drink. Also, use (Ice chips melt to half the fluid.) • Rinsing your mouth with water these tips for limiting your fluids: 1 can of soda 12 oz. 360 mL • Sip a small bottle of water throughout the day (record it in the table as part of a snack). TARGET: Daily amount less than 64 oz. 2,000 mL

• Fight thirst by using lip salve/gloss, sucking on Record fluids using the same units of measure, so you can easily ice chips, eating frozen grapes or hard candies, add up your daily amount. The table above shows ounce and mL chewing sugar-free gum, or using mouth swabs. equivalents for common amounts.

Fluid tracker Example Use the tables below to track your daily fluids. Each table covers a week, and the entire page lets you track your fluids for 3 weeks. You may want to make a photocopy of the blank sheet before you get started, so you can make more copies as On Sunday, Evelyn had the fluids shown below and tracked them as shown in the table below. The table at the bottom of this page shows an you need them. To track her fluids, she first wrote down the fluid ounces for each meal and snack, and then converted them to mL.Week: (Remember, for commonSun amounts suchMon as a cup orTues a can of soda,Wed you Thurs Fri Sat can use the conversion table above as a reference. You can also use the formula “1 ounce = 30 mL” oz. mL oz. mL oz. mL oz. mL oz. mL oz. mL oz. mL to figure the mL for any amount in ounces.) Breakfast Snack example of how your fluid intake can add up to Fluids Lunch Ounces mL Breakfast: 1 cup of milk with cereal Snack 8 oz. 240 mL Snack: 2 cups of watermelon Dinner 16 oz. 480 mL (Ice cream, sherbet, and soup count as fluid, asDAILY well as TOTAL fruits and vegetables with a lot of water, such as watermelon.) (2,000 mL or less) Lunch: 1 can of soda 12 oz. 360 mL 64 ounces (about 2 liters) a day. As you can see, this Snack: 1 cup of ice cream Week: Sun Mon Tues8 oz. Wed240 mL Thurs Fri Sat Dinner: 1 cup of soup, 10-ounce glass of water oz. mL oz. mL oz. 18 mLoz. oz. 540mL mL oz. mL oz. mL oz. mL Re-thinking DAILY TOTAL Breakfast 62 oz. 1,860 mL Snack 1 Lunch Snack still allows you to drink a fairly normal amount of Dinner DAILY TOTAL water drinking (2,000 mL or less)

Week: Sun Mon Tues Wed Thurs Fri Sat oz. mL oz. mL oz. mL oz. mL oz. mL oz. mL oz. mL fluid each day. Intermountain’s Heart Failure Fluid Breakfast Snack Lunch Snack In general, drinking water is Dinner DAILY TOTAL Tracker can help you record your fluids and add up (2,000 mL or less) good for you. But it’s a myth © 2010 Intermountain Healthcare. All rights reserved. The content presented here is for your information only. It is not a substitute for professional medical advice, and it should not be used to diagnose or treat a health problem or disease. Please consult your healthcare provider if you have any questions or concerns. More health information is 2 your total each day. available at intermountainhealthcare.org. Patient and Provider Publications 801.442.2963 FS160 - 09/10 Also available in Spanish. that everyone should drink a lot of water to “flush out the kidneys.” And the common 3 Limit alcohol prescription to “drink more water” does NOT apply to Here are a couple of good reasons to limit your alcohol intake: people with heart failure. • It helps limit your fluid intake to reduce the strain on your heart. To ease symptoms, people • It prevents heart muscle damage that may be caused by more-than- with heart failure need to limit — not increase — the moderate alcohol use. fluids they take in. According to the American Heart Association, women should have no more than 1 drink each day (a beer, glass of wine, or cocktail) and men should have no more than 1 to 2 drinks each day. (Note: if alcohol caused your heart failure, stay away from alcohol completely.)

Here’s a sample of how fluids can add up to your limit of 64 ounces (about 2,000 mL or 2 liters):

Meal Fluids Ounces mL

Breakfast 1 cup milk (8 ounces), 1 cup tea (8 ounces) 16 oz. 480 mL

Lunch 1 glass water (10 ounces), 1 cup soup (8 ounces) 18 oz. 540 mL

Snack 1 can soda (12 ounces) 12 oz. 360 mL

Dinner 1 glass water (10 ounces), 1 cup watermelon (8 ounces) 18 oz. 540 mL

DAILY TOTAL 64 oz. 1,920 mL (about 1.9 liters)

22 LIVING WITH HEART FAILURE MAW S Diet tips DIET

Buyers beware!

When buying prepared or processed foods, you’ll need to read the label to make sure you can stay within your daily “budget” of 2,000 mg of sodium per day. For example, look at this soup label below:

Nutrition Facts Light Serving Size 1 cup (239g) Servings per container about 2

Amount per Serving Calories 100 Calories from Fat 15 When light is wrong Watch out! % Daily Value * The nutrition Don’t be fooled by “light” Total Fat 2.5g 2% facts are for just labels on foods. A “light” label one serving. Saturated Fat 1g 0% only refers to the amount of fat in a food — not the amount of Trans Fat 0.5g salt. Many low-fat or fat-free Cholesterol 15mg 5% foods are actually quite high Sodium 850mg 35% in salt! Check the label Total Carbohydrate 15g 5% before buying. Dietary Fiber 1g 4% Sugars 1g Protein 7g When foods are fluids You’ll need to count some Since this can contains 2 servings at 850 mg of sodium each, eating this foods as fluids in your diet. soup by yourself would use up almost all of your sodium budget for the Such foods include: day (one can = 1,700 mg sodium). • Soup Your choice: skip this soup in favor • of a lower-sodium alternative, Sherbet and ice cream or limit your portion to a • Gelatin single serving — or even • Watermelon half a serving. • Iceberg lettuce Or better yet, make a • Other fruits and vegetables homemade version that contain a lot of fluid that is salt-free.

LIVING WITH HEART FAILURE 23 MAW S Eating out DIET You can still enjoy eating out if you have heart failure — it just requires a little extra thought and flexibility. Follow these 3 guidelines whenever you eat out:

99Make smart menu selections 99Ask for a “special order” (such as no salt) Keep it simple 99 keep portion sizes small For the heart-healthiest meals, choose foods in their simplest forms. For example, skinless chicken breast is a better choice than chicken salad, and Make smart menu selections a broiled fish fillet is 99 preferable to stuffed fish. To make healthy choices at a restaurant, it helps to know a few cooking terms. These are clues as to ingredients and preparation methods, and help you make better selections from the menu.

Choose entrees that Avoid foods that are are described this way: described this way:

• Steamed • Buttery, with butter, in butter sauce • In its own juice • Creamed, creamy, cream • Garden fresh sauce, gravy, hollandaise • Broiled • Parmesan, au gratin, cheese • Roasted sauce, scalloped

• Poached • Sautéed, fried, pan fried, Menu tip-offs crispy, braised • Lean The table on the right can help • Breaded, stuffed you avoid high-sodium foods • Casserole, hash, pot pie and also foods that are high in fat and calories. Remember, • Marinated (in oil), basted in keeping your weight down will butter, with gravy, in brine also help you manage your • Prime (the grade of meat heart failure! with the most fat)

24 LIVING WITH HEART FAILURE A few more tips for making smart menu selections: MAW S DIET • Breakfast. When you’re eating breakfast out, order items like oatmeal, eggs sunny-side up, toast with jelly, juice, skim milk, and a banana. Avoid breakfast meats. Also, watch out for waffles and pancakes — they’re hidden sources of sodium.

• Lunch. Sandwich shops are a good choice for heart failure patients, since you can have your lunch made to order. Start with whole wheat, rye, sourdough, or pumpernickel bread. Select grilled or fresh meats — not processed meats. Garnish with lettuce, grilled vegetables, tomatoes, onions, and/or bell peppers.

• Snacks. Watch out for high-sodium chips and crackers. Choose other crunchy finger foods like carrot and celery sticks, fresh fruit, or lower-sodium snacks.

• Dessert. Choose fresh fruit, or frozen desserts that are low in sodium and fat — for example ices, sorbets, sherbet, and fat-free frozen yogurts and ice cream. Request your frozen dessert in a bowl, rather than a cone (cones add sodium). Hold the nuts and rich toppings (fudge, butterscotch).

• Delivery. If you call out for pizza, you’ll need to order carefully. Watch Select your out for the high-sodium tomato sauce, pepperoni, and cheese. Instead, salad sensibly choose toppings like ricotta cheese and vegetables. A trip to the salad bar can • Drive-through. Fast food isn’t your best option, but if you use the drive- make it easier to get all your daily vegetables and through, opt for healthier items such as salad or broiled chicken breast. fruits — and also fill you up. Ask for the nutrition facts on your meal, and say no to fries or “supersize.” However, watch out for salad dressings — which may contain a lot of salt and fat — and salty, fatty meats and cheeses. Limit these 9 9 Ask for a items, or choose healthier special order alternatives.

Keep in mind that you can always ask your server about ingredients and cooking methods — you shouldn’t have to guess. You can also ask your server if a particular dish can be prepared in a heart-healthier way. For example, many restaurants will be happy to prepare a meal without salt, steam foods rather than fry them, and serve sauces, gravies, and dressings “on the side.”

LIVING WITH HEART FAILURE 25 MAW S DIET

9 9Keep portion sizes small Americans tend to be big eaters. To help control your portions, use the guidelines in this table:

To help you judge portions, use these “handy”formulas: Food Limit portion size to:

Lean meat, fish, poultry 3 ounces (the size of your palm or t (boneless) a deck of cards) thumb = 1 ounce Bread 1 slice

Cereal, ready-to-eat ¾ cup - 1 cup

t Cereal, cooked without salt ½ cup handful = 1-2 ounces 1 medium (the size of a tennis ball), Fresh fruit or 1 cup cut up

Fresh juice* ¾ cup t palm = Milk (skim is best)* 1 cup 3 ounces

Vegetables, cooked ½ cup

Vegetables, raw 1 cup t (including salad) fist = 1 cup Pasta, rice, or other ½ cup cooked grains

Baked potato ½ large potato

Mashed potatoes ½ cup

Lite or fat-free sorbet, sherbet, yogurt, or ½ cup ice cream*

* These are counted in your total fluid intake.

26 LIVING WITH HEART FAILURE MAWD symptoms

Recognize your symptoms As you learn to manage your heart failure with the MAWDS plan, you’ll soon be aware of how important YOU are in maintaining your health. The last component in MAWDS is your responsibility to recognize your heart failure symptoms and take appropriate action. See the Heart Failure Action Plan on page 31 for a list of heart failure symptoms and what to do. What if my symptoms become worse? Coping with It’s your job to monitor your symptoms and communicate with your symptoms… healthcare providers about any changes. This way, they can make any and stress necessary adjustments in your treatment — before your symptoms As you learn to pay attention become too severe. This can prevent unnecessary trips to the hospital. to your physical health, don’t neglect your emotional health. What if I have no symptoms? With a chronic disease like It’s possible to have heart failure without symptoms such as fatigue or heart failure, you can expect good and bad days and the shortness of breath. Your lack of symptoms does not mean that you can feeling that you’re riding an ignore your diagnosis and treatment plan. Instead, like all other heart emotional roller coaster. You’ll failure patients, you need to follow every aspect of your treatment plan. manage ALL your days better if This includes taking prescribed medications to prevent the progression you acknowledge and learn to of your heart disease. cope with the stress that heart failure can bring to you and your family. t Dear diary… Use your Intermountain Heart Failure Self-Care Diary to help you monitor your symptoms and keep you on the right track with every aspect of your MAWDS plan. Even if you don’t notice any symptoms, continue to follow your MAWDS treatment plan faithfully. Ask your provider for a copy — and review your trends at each office visit.

LIVING WITH HEART FAILURE 27 Facing Your Future

A heart failure diagnosis takes some getting used to. As you try to understand and accept what it means to have heart failure, you’ll probably feel a range of emotions. Your outlook on the future may also change, depending on your prognosis. Heart failure can range from mild or severe, and people respond differently to treatment. For some people, heart failure symptoms are reversible with proper treatment. For others, symptoms get worse over time, passing through the general stages described on the next page. Accepting your diagnosis Given the uncertainty of your diagnosis, it’s natural — and even healthy — to grieve for yourself. Managing your feelings about heart failure is an important aspect of taking care of yourself. The emotional stages you may expect after a diagnosis of heart failure are described below.

Your initial reaction Adjusting to your New habits become condition routine Your initial reaction may be shock, disbelief, denial, or For 3 to 12 months after your Finally, when new habits become numbness. For the first few diagnosis, you may experience routine and your understanding months, you may have a hard preoccupation, fear, anxiety, of heart failure improves, you’ll time acknowledging your anger, or hopelessness. probably begin to feel more condition. It’s tough to be During this time, you may peaceful about your diagnosis. told you have heart failure — struggle to integrate new You may get satisfaction from it’s a new and unwelcome routines — and a new sense of the adjustments you’ve made in companion to your life. responsibility — into your daily your life, and feel new resolve life. Yet from questions of “why and hope about the future. me?” and “what if?”, you will probably move gradually toward more acceptance of your condition.

Throughout these emotional stages, be patient with yourself. Adjusting to life with heart failure isn’t easy, but many people have learned to accept their diagnosis and to lead lives filled with a renewed sense of purpose and hope. With time, support, and patience — you can, too.

28 LIVING WITH HEART FAILURE Understanding the stages Preventing of heart failure re-hospitalization

When you are diagnosed, your doctor will also determine the severity of You may need to be hospitalized your disease. Heart failure often progresses through four stages, described for heart failure at some point, below. Your treatment options will vary at each stage. Knowing these stages but there are ways to avoid will help you understand your treatment and how to manage your condition. returning to the hospital for additional treatment. Below are reasons you may need to return Stage Self-management and treatment options to the hospital, and how to prevent them: Stage A: Managing or treating risk factors to Risk of developing prevent heart failure: • Running out of medications, heart failure • Manage chronic conditions: high or not taking them correctly. Heart failure has not developed yet. cholesterol, high blood pressure, Prevent this by faithfully But you have several conditions and diabetes following your medication plan. that can lead to heart failure • Stop smoking, limit excess alcohol, • Taking in too much salt or (see page 6). and avoid illegal drugs fluid. Prevent this by following • Exercise regularly and manage your weight MAWDS every day. • Medical conditions such as Stage B: • Managing risk factors — see above infection, high blood pressure, Heart dysfunction, but • Taking medications to relieve or heart rhythm problems. To no symptoms symptoms and reduce stress on the help prevent re-hospitalization, Your heart doesn’t pump as much heart (see page 14) follow your doctor’s directions blood as you need, but you don’t have • If you have heart rhythm problems, symptoms. This also includes people to manage these conditions. you may need an implantable device with heart valve disease or a history to manage your heart rhythm of heart attack. • Using non-steroidal anti-inflammatories • Stage C: Continuing the treatment used (NSAIDs), such as ibuprofen, at Stages A and B Heart failure symptoms (past aspirin, and Aleve. These types or present) • Taking more medications to of pain relievers can add to Symptoms, such as fatigue and manage symptoms and aid the heart fluid retention. Don’t take feeling short of breath, usually (see page 14) occur when you are active. them without talking to your healthcare provider. Stage D: • Continuing the treatment used Advanced heart failure at Stages A, B, and C • A heart attack, or the progression of heart failure At this stage, heart failure symptoms • Mechanical devices to aid the heart (see the table at left). Keep can be severe and they happen even • Heart transplant while you are at rest. Medication appointments with your • Home care or hospice doesn’t manage symptoms well. provider and follow your treatment plan to keep your heart failure stable. While it can seem discouraging to consider these stages, realize that they tell only part of the story. The rest of the story is yours to create. Following MAWDS and working with your healthcare providers, you have a lot of power to manage your symptoms and learn to live well with heart failure.

LIVING WITH HEART FAILURE 29 Resources The resources listed here provide information, encouragement, and support.

More information from Intermountain FACT SHEET FOR PATIENTS AND FAMILIES Heart Failure Fluid Tracker

If you have heart failure, one key to managing it is restricting sodium (salt) and limiting fluids, as part Common amounts Ounces mL of a heart failure diet. Limiting fluids can ease edema FACT SHEET FOR PATIENTS AND FAMILIES (swelling) and lighten the workload on your heart. 2 tablespoons 1 oz. 30 mL Generally, limit your fluid intake to 2 liters (2,000 mL) 1 small juice glass 4 oz. 120 mL per day. (Check with your healthcare provider to be sure.) 1 cup 8 oz. 240 mL • Use the tracker on the other side of this handout Heart Failure Self-Care Diary: A tool for your 1 cup of ice chips 4 oz. 120 mL to monitor how much fluid you drink. Also, use (Ice chips melt to half the fluid.) these tips for limiting your fluids: Heart Failure 1 can of soda 12 oz. 360 mL • Sip a small bottle of water throughout the day (record it in the table as part of a snack). What is it? TARGET: Daily amount less than 64 oz. 2,000 mL • Fight thirst by using lip salve/gloss, sucking on Enlarged heart Heart failure is a conditionRecord in fluids which using your the heart same can’tunits of measure, so you can easily ice chips, eating frozen grapes or hard candies, add up your daily amount. The table above shows ounce and mL pump enough blood to meet your body’s needs. chewing sugar-free gum, or using mouth swabs. equivalents for common amounts. MAWDS plan Usually this is because your heart muscle is too weak to “squeeze” out enough blood with each beat. But heart failure can also happen when your heart becomes too stiff “Normal” heart Example and can’t fill up with enough blood between each beat. Heart failure is a serious condition — and it’s also quite On Sunday, Evelyn had the fluids shown below and tracked them as shown in the table below. common. Right now in the United States, more than 5 To track her fluids,million she firstpeople wrote are livingdown withthe fluidheart failure.ounces for This each handout meal and snack, and then converted them toexplains mL. (Remember, the basics offor this common condition, amounts including such ashow a cupto or a can of soda, you can use the conversionmanage table symptoms. above as a reference. You can also use the formula “1 ounce = 30 mL” to figure the mL for any amount in ounces.) • Heart Failure fact sheet: A summary for family or friends What are the symptoms? Common symptoms of heart failure include: With heart failure, initial damage weakens the heart muscle. Fluids Ounces To compensate,mL your heart beats faster and enlarges (stretches • Shortness of breath or thickens). Over time, the heart muscle begins to wear out. Breakfast: 1 cup of milk with cereal 8 oz. 240 mL • Cough Snack: 2 cups of watermelon • Feeling very tired and weak 16 oz. 480 mL (Ice cream, sherbet, and soup count as fluid, as well as fruits and vegetables with a lot of water, • Atherosclerosis (coronary artery disease). • Weight gain (from fluid buildup) such as watermelon.) If the arteries that supply your heart with blood • Swollen ankles, feet, belly, lower back, and fingers become narrowed by fatty plaque buildup, you have Lunch: 1 can of soda 12 oz. 360 mL • Trouble concentrating or remembering atherosclerosis. Atherosclerosis limits the amount of Snack: 1 cup of ice cream 8 oz. oxygen240 yourmL heart receives and weakens the muscle. The underlying condition of heart failure (heart muscle Dinner: 1 cup of soup, 10-ounce glass of water 18 oz. It can540 also mL cause a heart attack, which can further • damage and weakness) cannot be cured, but symptoms Heart Failure Fluid Tracker fact sheet: A tool to track damage your heart. DAILY TOTAL can be managed. Good treatment and self-care can slow 62 oz. 1,860 mL • High blood pressure (hypertension). Poorly the progression of these symptoms. 1 controlled blood pressure makes your heart work What causes it? harder to pump blood throughout your body. Over time, this extra work can wear out your heart Heart failure occurs most often in older people — but it and lead to heart failure. can happen to anyone, at any age. Heart failure can be caused by anything that damages and weakens the heart • Heart valve problems. Heart valves control the your fluid intake muscle, but up to 40% of all cases of heart muscle one-way flow of blood through your heart. If valves damage have no known cause. The most common known are damaged or abnormal, you can have back-flow or causes of heart muscle damage listed at right. limited forward flow. Both make your heart work harder and can lead to heart failure. • Alcohol abuse. Long-term alcohol abuse can severely weaken your heart muscle. 1 • Heart Failure DVD: A video with information and tips Reach out for support! Living Well with Heart Failure

© 20 10 3 -20 3/1 13 - 0 Inte 007 rmo . HF untain erved Self-management is critical to Healthcare. All rights res your health, so it’s important to get support in following your Internet sites care plan. Support can also help • Intermountain Healthcare heart failure page: you accept your reactions to your www.intermountainhealthcare.org/heartfailure diagnosis, so they don’t get in the • Utah Cardiac Transplant Program and Advanced Heart Failure Therapies way of what you need to do. Program: www.intermountainheartinstitute.org/hearttransplant If you need encouragement, • American Association of Heart Failure Nurses (AAHFN): advice, or just someone to talk to, www.aahfnpatienteducation.com reach out to family members and your heart care team. Also, take • American Heart Association: www.hearthub.org advantage of the resources listed • Heart Failure Society of America: www.abouthf.org on this page. • National Heart, Lung, and Blood Institute: www.nhlbi.nih.gov Specialized support Books • Palliative care gives patients • 100 Questions and Answers about Congestive Heart Failure and families extra support to Campion Quinn, MD. Jones and Barlett Publishers, Inc; 2006. help ease symptoms, manage the changes heart failure can • American Heart Association Low-Salt Cookbook, 3rd Edition: bring, and clarify treatment A Complete Guide to Reducing Sodium and Fat in Your Diet choices. The goal is helping American Heart Association. Clarkston Potter Publisher; 2007. you have a better quality of • Living Well With Heart Failure, the Misnamed, Misunderstood Condition life. Palliative care can be used Edward Kasper, MD and Mary Knudson. Johns Hopkins University Press, 2010. at any stage of life, along with other heart failure treatments. • Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure Marc A. Silver, MD. Da Capo Press; 2006. • Hospice is available to people with a serious illness who are not expected to live longer than 6 months. Hospice helps people live life as fully as possible, maintain their dignity, and keep personal control over their life.

30 LIVING WITH HEART FAILURE Heart Failure Action Plan

To help you monitor your condition — and prevent a bad situation from becoming worse — use this Heart Failure Action Plan. Your Action Plan divides your symptoms into three zones. Use your Intermountain Heart Failure Self-Care Diary to record your zones every day.

n Feeling well Keep up the good work! n Breathing is easy Follow MAWDS every day! n Weight is stable GO

n Symptoms maintain therapy are stable

n Not feeling well Call your healthcare provider to find out how to prevent symptoms n Weight is up 2 or more pounds in one day or from becoming severe. up 5 pounds over your target weight Provider’s instructions: ______n Noticeable swelling CAUTION or bloating step up therapy ______

n Some difficulty ______breathing with activity ______and at night ______n Symptoms are ______worsening

n Breathlessness or Call your healthcare provider or chest heaviness at rest go directly to the emergency room. DO NOT try to treat this yourself. n Weight is up more than 5 pounds in STOP one day get help now Provider’s number: ______n Fainting Emergency number: 911 n Symptoms are severe

LIVING WITH HEART FAILURE 31 To find these and other resources, go to: intermountainhealthcare.org/heartfailure

©2006 - 2014 Intermountain Healthcare. All rights reserved. The content presented here is for your information only. It is not a substitute for professional medical advice, and it should not be used to diagnose or treat a health problem or disease. Please consult your healthcare provider if you have any questions or concerns. More health information is available at www.intermountainhealthcare.org/heartfailure. Patient and Provider Publications 801-442-2963 HF003 – 10/14