Living with Heart Failure

Being diagnosed with heart failure is frightening, and living with limitations imposed by the disease can be a challenge. However, you are not alone: 2.5 million women in the United States are currently living with heart failure.1 On average, a woman with heart failure will live another 10 years.2 With proper treatment and care many women survive for much longer and enjoy a long, fulfilling life after a diagnosis of heart failure.

Some aspects of living with heart failure are outside your control, but your attitude and approach to your rehabilitation and treatment plan can have a major impact on the length and quality of your life. Dedicating yourself to the recommended treatment and lifestyle changes means you will live longer, have fewer symptoms, be hospitalized less often, and be able to engage in more activities.

This article lists some things you can do to give yourself the best chance of living well after a diagnosis of heart failure. Click any title to go to that section.

  • Educate yourself
  • Get organized
  • Have a treatment plan and follow it
  • Manage your medications
  • Be active and exercise regularly
  • Pace yourself
  • Eat a heart healthy diet
  • Know when to see a doctor
  • Find the right doctor
  • Get help from your friends, family, and community
  • Care for your emotional health
  • Don’t smoke

Educate Yourself

The first thing to do after receiving a diagnosis of heart failure is to learn everything you can about your condition and how it is treated. Educating yourself is the best way to demystify the disease and make informed decisions about treatment. Knowing what you are up against and what you can do will also motivate you to make challenging lifestyle changes and follow a complex treatment plan. Remember that ultimately you are the one responsible for your own health, so you need to be proactive. Women who take an active part in their own care are better able to follow their treatment plan, enabling them to live longer, have fewer symptoms, and engage in more activities.

Your doctor or local hospital may be able to direct you to classes for heart failure patients in your area, and your entire medical team is a valuable resource when you have questions. The internet can also be a great resource for information on heart failure and other diseases. Always be sure that information comes from a credible source that is medically reviewed.

You may want to start with our article on Heart Failure Basics and our overviews of treatments for systolic heart failure and diastolic heart failure. See Links to Heart Failure Info for many other organizations that provide information about heart failure.

Get Organized

Organize your healthcare information and plan ahead in case there is an emergency or your heart failure suddenly gets worse. Some things you should always have:

  • Phone and fax numbers for your doctors and hospital
  • Your insurance information
  • A list of medications you are taking (prescribed and over-the-counter), how often you take them, and what dose you are taking
  • A list of allergies you have (to medications or other things)
  • A copy of your resting ECG (get one from your doctor)
  • A list of surgeries or procedures you have had
  • If you have an implanted device such as a pacemaker or ICD, carry the card that shows which model it is and when it was implanted
  • Get a medical ID badge that lists heart failure and any other medical conditions you have, in case you arrive at the hospital unconscious or are unable to communicate with doctors
  • Know where the closest hospital is and have a plan on how to get there (or call an ambulance)

Make sure a loved one has a copy of this information or knows where to find it, and always take your emergency information with you when you travel.

In the late stages of heart failure, organizing your information about what care you would like to receive and what happens after you are gone can provide peace of mind and ease the burden on your loved ones. Talk to your healthcare provider about advanced care directives: instructions, prepared in advance, to direct your medical care if you become unable to do so. You may also want to talk to a lawyer about creating a living will, and to a financial advisor or loved one about financial planning.

Treatment Plan

You should work with your healthcare team to develop a detailed treatment plan for heart failure, including medication, regular testing, and a cardiac rehabilitation plan and exercise training. The more closely you follow your treatment plan, the fewer symptoms you will have and the longer you will live.

Be sure to keep all scheduled appointments, including regular doctor’s office visits and blood and other tests to monitor how you are responding to medications and how your treatment is progressing.

Setting realistic goals for your treatment and evaluating your progress will help motivate you and show you the benefit that lifestyle changes and medications are having on your quality of life. You may want to keep a heart health journal that to keep track of your symptoms, medications, diet, and exercise.

In addition to treatment for heart failure, your treatment plan should include medications and lifestyle changes to control any other conditions you have, such as high blood pressure.

Manage Your Medications

Women with heart failure will have to take medications for the rest of their lives. It is extremely important that you take all your medications exactly as prescribed. Not following a medication schedule is one of the most common reasons women with heart failure end up back in the hospital.1 These medications control your heart failure symptoms and slow the progression of the disease—if you stop taking them, your symptoms will come back, and you could end up doing even more damage to your heart.

Never stop or change the way you take your medications on your own. If you are experiencing side effects, talk to your doctor to see if the dose can be adjusted or you can be switched to another similar drug. Don’t take any new medications, including over-the-counter medications such as pain relievers, antacids, nutritional supplements, skin patches, or eye drops without talking to you doctor first. These can make your life-saving heart failure medications less effective or even cause dangerous side effects. See Medications to Avoid and ask your doctor or pharmacist if you are not sure.

A heart failure treatment plan can include many different medications with different instructions taken on various schedules. Organizing your medication plan will help ensure your treatment is as effective as possible. Some tips:

  • Learn about all your medications and how they are taken: why you are taking them, whether you should take them with food, other medications or drugs that can stop them from working properly. You can learn about medications from your doctor or pharmacist, and from our HeartHealthyWomen.org medication pages:
    • ACE Inhibitors
    • Aldosterone Antagonists
    • ARBs
    • Blood Thinners & Aspirin
    • Beta Blockers
    • Diuretics
    • Digitalis & Inotropes
    • Hormone Therapy
    • Nitrates
    • Medications to Avoid
  • Use a pill box or chart so you don’t forget to take your medications or get confused which medications to take when
  • Refill your medications before you run out. It may be helpful to write down reminders to refill your medications on a calendar or in your heart health journal.
  • Have all your prescriptions filled at the same pharmacy. This way you can get to know your pharmacist and she or he will be more likely to let you know if some of them should not be taken together and how to manage side effects.
  • When you travel, take an extra supply of all your medications in case you are unable to fill your prescriptions while you are away. If you fly, have your medications and emergency information in your carry-on bag in case your luggage is lost.

Exercise

Your heart failure treatment plan will include physical activity, which can improve your symptoms and make performing everyday tasks easier. This will begin in the hospital or an outpatient facility as part of cardiac rehabilitation. For much more on how physical activity can benefit women with heart failure and what training programs are like, see Exercise Training.

After these programs are finished you should try to stay physically active. Most women whose heart failure is stable and controlled can lead active lives. You should not exercise if you feel overly tired or don’t feel well, and should avoid moving heavy objects or doing chores or activities that involve intense exertion.

You should take a break if you experience any of the following symptoms during exercise. Call your doctor if the symptoms do not go away with rest.

  • Chest pain
  • Weakness, tiredness
  • Shortness of breath
  • Dizziness or lightheadedness
  • Pressure or pain in your jaw, neck, chest, shoulder, or arm
  • Nausea, vomiting, indigestion

Ask your doctor how much physical activity is safe for you, what kinds of activities you can perform, and how to know if you’ve done too much.

Pace Yourself

Balancing rest and activity is important. Planning tasks ahead of time, conserving your energy for the most important tasks, and taking breaks during the day will enable you to be more independent and accomplish more.

Some tips for getting things done:

  • Simplify your life and set realistic goals for each day; you may have to change the way you normally do things
  • Plan the activities or chores you want to get done and do the most important ones first
  • Do not plan activities for immediately after a meal because processing food increases your body’s need for oxygen. Give yourself at least 30 minutes to digest after a meal.
  • Activity in extreme weather puts more strain on your heart than when it is done in moderate temperatures. Scale back your tasks when the weather is very hot or very cold.
  • Sit while working as much as you can—sitting takes less energy than standing

Remember to take breaks:

  • Spread out activities and rest periods over the entire day
  • Take breaks before you get tired: at least 30 minutes twice a day
  • Get plenty of sleep and take a nap if you are planning to stay up late
  • If you become tired during chores, stop and rest
  • During your rest periods, keep your feet up to reduce swelling in your legs

An occupational therapist will be able to help you conserve your energy and figure out ways to perform daily tasks; ask your doctor to recommend one. Your family and friends may also willing to help with tasks that are difficult for you. Getting help means you’ll have more energy for things you enjoy and tasks you want to do yourself.

Below is a list of common tips labor-saving tips that can make specific tasks easier. Ask your occupational therapist for more information.

  • Have a bench and hand-held shower head installed to make bathing easier
  • An elevated toilet seat with support bars can make sitting and getting up easier
  • Use automated appliances whenever possible, such as:
    • Dishwasher
    • Clothes dryer
    • Electric can opener, mixer
    • Riding mower
  • Use long-handled, mops, dusters, and dustpans
  • Keep cleaning supplies on every floor to minimize the need to climb stairs
  • Store kitchen and other household equipment close to where it is used
  • Store items at chest height to eliminate reaching and bending
  • Use wheels to move things whenever you can:
    • Shopping carts for groceries
    • Wheeled garbage cans
    • Wheeled carts to store your cleaning or other supplies
    • Use a dolly to move heavy bags or boxes, or get someone to help you
    • Laundry cart
  • Use proper posture when performing physical tasks:
    • Slide, don’t lift whenever possible
    • If you have to lift something, use both hands and bend at the knees (not your back)
    • Keep one foot up on a low stool while standing to reduce back strain
    • Sit up straight, particularly when sitting for long periods (such as while driving)
    • Support your weight on your elbows when leaning forward
  • Adjust your wardrobe to make dressing and undressing easier:
    • Wear clothes that don’t require ironing or special washing treatment
    • Use clothes with buttons or zippers instead of ones that pull on
    • Loose-fitting clothing makes breathing easier when putting on socks and shoes
    • Wear low-heeled, slip-on shoes and use a long-handled shoe horn and sock aid
    • Wear a robe instead of a towel to dry off after a shower

Eat a Heart Healthy Diet

A heart healthy diet promotes general well-being, makes medications more effective, and improves heart health in all women, whether or not they have heart failure. Women with heart failure may need to follow additional guidelines to control their symptoms and prevent heart failure from getting worse.

One of the most important things for women with heart failure is to control the fluid levels in your body. Because the heart does not pump as well as it should, fluid can build up and worsen symptoms such as shortness of breath and swelling. You will need to reduce your intake of salt and salty foods (salt causes your body to hold on to liquid) and control the amount of fluids you drink. You will be asked to follow a low-salt diet, limiting yourself to less than 2000 to 3000 milligrams of salt each day (see the Heart Failure Society of America’s How to Follow a Low-Sodium Diet for more information). Ask your doctor if salt substitutes are safe—some contain potassium, which can interfere with heart failure medications. You should also limit your intake daily intake of liquids (drinks and all foods that are liquid at room temperature, such as ice cream) to 2 liters a day or less (equivalent to one large bottle of soda).

Your should also discuss alcohol with your doctor since it can damage the heart. Drinking too much alcohol and not following fluid restrictions are common causes of hospitalization in women with heart failure.

Know When to See a Doctor

It is important to be vigilant for signs of medication side effects or indications that your heart failure may be getting worse. Ask your doctor what warning signs you should watch for and what to do if you experience them.

Your doctor will ask you to monitor your weight, heart rate, blood sugar (if you are diabetic), and sometimes blood pressure every day. Keep track of all these numbers in your heart journal and take them with you to every office visit. To measure your heart rate (the number of times your heart beats in a minute), place your fingertips on the side of your neck or on the inside side of your wrist to find your pulse. Count how many pulses you feel in 10 seconds, then multiply by 6 to get your heart rate. See Can I measure my own blood pressure for tips on home blood pressure monitoring.

You should call your doctor if you:

  • Have unexplained weight gain: 3 or more pounds in a day or 5 pounds or more in a week
  • Lose 5 pounds or more in a few days
  • Have shortness of breath that is new or has recently become worse
  • Have increased swelling in your ankles, feet or legs
  • Feel bloated or have swelling in your abdomen
  • Have symptoms of the flu, a respiratory infection, cough, or fever
  • Experience nausea, vomiting, diarrhea, or loss of appetite
  • Have decreased urination or dark or bloody urine
  • Have a new or worsened irregular heartbeat
  • Have chest pain that is relieved with rest
  • Change your sleep patterns: difficulty sleeping or sleep more than usual
  • Experience coughing or shortness of breath that wakes you up at night or requires you to be propped up with pillows to sleep
  • Have a fast heart rate (around 120 beats per minute at rest)
  • Feel constant dizziness or lightheadedness
  • Have any other new symptom or worsened symptom that you are worried about

You should call 9-1-1 or go to the emergency room if you:

  • Have chest pain or other symptoms of a heart attack
  • Develop a severe headache or other symptoms of a stroke
  • Have a racing heartbeat (more than 120 to 150 beats per minute)
  • Have shortness of breath that does not go away when you rest
  • Unexpectedly lose consciousness

Infections can be especially dangerous for patients with heart failure, and are a common cause of hospitalization in women with heart failure.1 Because your body is already weakened, even a simple cold or the flu can really slow you down or cause dangerous complications. Your immune system may be weakened, so you need to take common sense steps to avoid infection:

  • Wash your hands before eating, handling your pills, or touching your eyes, nose, or mouth
  • Wash your hands after going to bathroom or visiting the doctor’s office
  • Get a bottle of waterless hand sanitizer to keep in your purse

Find the Right Doctor

You should find a doctor who either specializes in treating heart failure or has experience treating heart failure in women. Forming a good partnership with your doctor is crucial to getting the best possible care, and a good partnership depends on communication. Find a doctor who you feel comfortable speaking to, takes time to listen to your concerns, and is easy to contact. Don’t worry about offending our doctor by seeking out a second opinion or switching providers—your health is the most important thing. It may not be easy to search for or change doctors when your symptoms are severe, but take advantage of the times when you are feeling good and your heart failure has stabilized to find a physician who meets your needs.

To find a heart failure specialist, you can ask for recommendations at the hospital where you received treatment, find one through your insurance company, or search for a doctor on the American Medical Association web site. You can also get involved with the community at WomenHeart and get recommendation from women who have been in your situation. Some other considerations:

  • Insurance coverage: You need a doctor who works with your insurance provider.
  • Hospital affiliation: Hospitals who perform large numbers of procedures and have a dedicated heart failure clinic are best. You can look up hospitals and compare their outcomes at www.hospitalcompare.hhs.gov.
  • Convenience and office policies: Look for a doctor who will return your calls or emails after hours, be willing to provide information over the phone, and is willing to schedule an appointment on short notice.

Some tips to help you better communicate with your provider:

  • Take notes. This will help you to remember what your doctor tells you; if you’re unsure of the meaning or spelling of a word, ask your doctor to explain or to write it down so you can look it up later. You can also use your notepad to write down questions as you think of them.
  • Ask questions. Make sure that you fully understand any tests ordered or treatments prescribed. Keep in mind that there are no “stupid” questions—every question that you might have is important when it comes to your heart health.
  • Speak up for yourself. If you feel that your doctor has not fully answered your questions or addressed your symptoms, be sure to say so. Also tell your doctor if a prescribed treatment is not working for you or you are having side effects. Your healthcare provider may prescribe a different treatment or a different dose of the same medication that could work better for you.
  • Take someone with you. Having another person go with you to office visits can make you more comfortable. She or he can also help you remember the doctor’s instructions later, as well as bring up any questions you may have forgotten.

Get Help From Your Friends, Family, & Community

What is social support?

Social support is the physical and emotional comfort we get from family, friends, and the community. Feeling that we are a valued part of the lives of others is important to everyone’s sense of well-being. Social support plays an important role in how we cope with life’s challenges, including heart failure. The more social support you receive, the less likely you are to suffer debilitating depression or anxiety. Many women with heart failure find that staying socially active help takes their mind off their symptoms and improves quality of life.

There are many different forms of social support. As you learn to live with heart failure, you can get social support from your loved ones and from support groups, where you can learn from people who are in the same situation you are. The social support we receive from others can be divided into a few main types:

  • Emotional support: people telling us that they care about us, that we are important to them, and listening to our emotional concerns
  • Informational support: when we get helpful information from people we know
  • Sharing points of view: when other people share with us how they have coped with a similar situation, or offer their own perspective on a problem
  • Feedback: information about us that we feel is honest and intended to help
  • Functional help: physical or organizational help in performing the tasks of everyday life, such as helping us get dressed or prepare food, or providing transportation

How do I involve my friends and family in my recovery and treatment?

It is important to remember the physical and emotional challenges you are dealing with also affect your loved ones. As with your doctor, communication is key. You may want to share information you’ve found about your condition with your friends and family to help them understand what is happening to your body and what they can do to help.

Some tips on getting help from friends and family:

  • Involve your loved ones early in your heart failure rehabilitation program and recovery so they can better understand what you are going through and how they can help. You may want to bring a family member to rehabilitation appointments or doctor visits.
  • Teach your family about your self-monitoring routines and let them know what symptoms to watch for and what to do in an emergency.
  • Enlist your loved ones to help you follow your treatment plan. For example, you may have someone call you to remind you take to take your medications each day, or have someone drive you to doctor’s visits. They can also help you buy and prepare food and provide encouragement to help you stick to a heart-healthy diet.
  • You can ease the stress on yourself and your loved ones by making it clear when you need their help and when you prefer to do things on your own.
  • Divide up the tasks you need help with so that everyone feels they are playing a part, but no one is overburdened. For example, one person could help you shop for groceries each week, another help you with laundry, etc.
  • Make a list of the phone numbers of your loved ones and put it by the phone; any time you need help or someone to talk to, you’ll know exactly who to call.
  • Make sure your family and friends know that you want to continue to be involved in recreational activities, and ask for help and transportation so you can attend social gatherings.

For More Information: Heart Failure Society of America Tips for Family & Friends

How do I find a support group?

Your doctor or hospital should be able to put you in contact with heart failure support groups in your area. See below for a list of national organizations that run support groups, as well as online forums for heart failure patients. You can also search online for “heart failure support group” to find an organization in your area.

WomenHeart

WomenHeart, the National Coalition for Women with Heart Disease, offers information and resources for women living with heart disease, including information on diagnosis and treatment, a national listing of women’s heart centers, research studies, and a bookstore.

Mended Hearts

Offers services to heart patients through visiting programs, support group meetings and educational forums (for an annual membership fee).

Daily Strength

Small online heart failure discussion forum.

Emotional Health

Emotional and relationship aspects of life with heart failure are often overlooked, but not dealing with them can seriously impair your recovery and quality of life.

Anxiety & Depression

Women with heart failure often feel fearful and emotionally isolated. Depression and anxiety are common after a diagnosis of heart failure, particularly in women. As much as 64% of women may be depressed after a diagnosis of heart failure, compared with less than half of men.3,4 However, emotional distress often improves over time, and counseling (and medication if necessary) can help you address these issues and improve your quality of life.5 Making an effort to engage in activities or hobbies you enjoy can also help minimize the emotional toll of heart failure.6

See Mental Recovery from Heart Disease for information about the symptoms of anxiety and depression that often follow a diagnosis of heart disease and what you can do about them.

Sexuality

If your heart failure is stable and you can tolerate mild physical activity (equivalent to 20 minutes of brisk walking) you are probably healthy enough for sex. However, be sure to talk to your doctor about whether you are healthy enough for sexual activity, and know how to recognize if your heart is working too hard (see here for signs that you should take a break).

There are often physical and emotional issues that make it difficult to resume sexual activity after a diagnosis of heart failure, and sexual problems are common in heart failure patients. In one study, more than 90% of women with heart failure experienced some type of sexual problems, yet 3 of 4 said that their doctors never brought up the issue.7 Women are often too embarrassed to discuss sexual issues with their doctor—don’t be! Sexual activity is an important part of your quality of life, and your doctor can suggest treatments and strategies to address emotional issues and work around physical problems.

In addition to hurting your quality of life, sexual problems can affect your relationship with your significant other. In one study, women with heart problems who suffered from sexual problems were more likely to quarrel with their partner and reported less tenderness, communication, and overall satisfaction with their relationship.8 You may want to bring your partner with you to the doctor or therapist to discuss sexual issues. This will help him better understand that the challenges you are facing and that there are biological causes for sexual problems such as decreased sex drive, vaginal dryness, and delayed orgasm. Partners of women with heart problems often fear that they will hurt their loved one during sexual activity; involving them in the discussion with your healthcare provider is a good way to address these fears.

Some tips for resuming sexual activity after a diagnosis of heart failure:

  • Know how much activity you can safely perform, and discuss any problems you have with your doctor
  • Although it is not usually the case, medication you are taking to treat heart failure (such as high blood pressure drugs) can contribute to sexual problems in some women.9 Your doctor may suggest changing doses, switching to a different drug, or ways to work around these side effects.
  • High blood pressure is a common cause of sexual problems. Vaginal dryness is the most frequent complaint (reported by 80% of women with heart failure).7 A personal lubricant can relieve this problem.
  • Women with heart disease are often more aware of heartbeat, breathing, and muscle tension, which can increase anxiety in sexual situations. Choose a time when you are rested, relaxed, and free from stress.
  • If you feel uncomfortable or tired during sexual activity, take a brief break to rest
  • Avoid having sex after a heavy meal; your body is already working hard to digest your food
  • Take it slowly; if you don’t yet feel ready for sexual intercourse, you can bond with your partner through less stressful intimate activities.
  • Choose positions that are most comfortable for you. You may prefer a position that does not put pressure on your chest, allowing you to breathe more easily.
  • Ask for a referral to a sexual therapist if your doctor is not able to adequately address your concerns

For More Information:

Heart Failure Society of America Educational Booklets

www.hfsa.org/heart_failure_education_modules.asp

American Heart Association: Heart Failure

www.americanheart.org/presenter.jhtml?identifier=1486

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