A Patient’s Guide to Living Confidently With Chronic Heart Failure
Circulation. 2013;127:e525-e528
Samuel F. Sears, Lawrence Woodrow, Katherine Cutitta, Jessica Ford, Julie B. Shea and John Cahill, Department of Psychology and Cardiovascular Research Institute, East Carolina University, Birmingham Women’s Hospital, Boston
Keywords: Chronic Heart Failure (CHF), quality of life (QoL), Beijing Anzhen Hospital, Department of Pediatric Cardiology, Ling Yan
Chronic heart failure (CHF) is a persistent disease state in which the heart is unable to pump enough blood to meet the body’s needs. Any medical condition that includes the words “insufficiency or failure” is intimidating, especially when it comes to the heart. Does “insufficiency or failure” mean there is no hope? Wrong! Despite the frustration of this medical term, patients can live longer and better lives with chronic heart failure with the right approach. It is important to develop confidence to be able to live successfully with chronic heart failure. Developing confidence includes building a confident mindset, positive and healthy actions, and reasonable expectations of disease regression that can be achieved.
Chronic heart failure is a challenging clinical condition that requires the patient and family to be aware of and monitor the symptoms of heart failure, seek to manage disease suffering, receive and install an intracardiac defibrillator (ICD), and actively pursue an improved quality of life. For the patients themselves, achieving these ambitious goals requires confidence in all aspects of treatment, including confidence in managing the disease, using medical devices, and improving quality of life.
Confidence in the disease
Confidence in illness refers to a way of seeing and perceiving the illness one has that leads to a greater sense of security and autonomy. Managing chronic heart failure by adopting appropriate self-health management can help build confidence in the disease. Self-health management involves a significant level of knowledge about one’s condition; informed consent for medical decisions that will minimize symptoms, or cope with symptoms.
(1) Understanding chronic heart failure
Chronic heart failure is a complex disease state that can present uniquely to each patient. For example, some patients with chronic heart failure may experience frequent fluid retention and edema, while others may experience shortness of breath after exertion. The first step in building confidence in your disease is to learn as much as you can about chronic heart failure and how it can affect you. Similar to mastering a subject in school, a patient with heart failure can and should be able to learn how the disease affects his or her body. The more you know about chronic heart failure, the more confident you will be in monitoring your symptoms, adhering to treatment, and coping with psychological issues.
(2) Monitoring the symptoms of chronic heart failure
Chronic heart failure can cause shortness of breath, fluid retention, weight gain, and exercise intolerance. The common symptoms are listed in Table 1. Sudden weight gain (3 pounds in 24 hours) suggests that your body is accumulating or retaining extra fluid. This is likely a sign that your heart is having problems maintaining proper circulating blood flow. Daily weighing can provide useful information to prevent worsening heart failure, which in turn can lead to early intervention with medications (such as diuretics). Elevated blood pressure and increased heart rate are also signs of a change in cardiac functional status, suggesting the need for medication adjustments. Measuring blood pressure and heart rate daily5 allows you to monitor many important changes so that they can be reported to your doctor in a timely manner. Some patients with heart failure prefer to chart their daily weight, blood pressure, medications taken, and participation in physical activity.
Table 1 Common symptoms of chronic heart failure
Shortness of breath or shortness of breath
Edema in the hands and feet (abdominal edema)
Lack of activity
Coughing and coughing up sputum
Increased or decreased urine output
Mental disturbance or difficulty concentrating
Difficulty sleeping due to breathing problems
(3) Adherence to treatment
Treatment adherence refers to the ability to take medications as prescribed, maintain a low-salt diet, limit alcohol consumption, maintain a lifestyle of some physical activity, quit smoking, and monitor heart failure symptoms (e.g., weight gain). The degree to which patients adhere to their treatment plan is an important factor in determining their future health status. Your health care treatment team generally assumes that you are following the treatment plan to the letter. Therefore communicating clearly and honestly with your health care provider about challenges or difficulties you are having in following medical advice will enable them to work together with you to better follow up on your treatment.
Many patients with chronic heart failure find it challenging to monitor daily behaviors and activities, and difficulties include limited physical status and psychological discomfort reactions. Depression and anxiety are strongly associated with a failure to adhere to treatment and can cause a decrease in quality of life. Understandably, physical changes and unusual symptoms can increase feelings of anxiety and discouragement. Health care professionals are usually aware of these typical emotional reactions and can help you cope with them.
(4) Disposing of psychological problems
Depression is common, with about 50% of patients with chronic heart failure experiencing depressive symptoms. Once depression is treated, patient compliance with treatment increases. Symptoms of depression are very similar to some heart failure symptoms, including fatigue, difficulty sleeping, loss of interest in activities, inability to concentrate, feeling hopeless, and changes in appetite. Anxiety is also common in patients with heart failure, with symptoms including excessive worry, fear, dread, muscle tension, sweating, palpitations, shortness of breath and fatigue.
Depression and anxiety can be treated with medications. It can also be managed with psychotherapy or counseling (e.g., cognitive behavioral therapy). This is done by educating and re-conceptualizing the mind to develop a healthier cognitive view of the illness and to bring the patient back to the activities they used to enjoy. If you believe that you are experiencing depression or anxiety at an unhealthy level, you should inform your healthcare provider immediately. Your doctor will be able to help you with prescribed medications and will refer you to a psychiatrist if needed.
Confidence in the medical device you carry
Some patients with chronic heart failure have a combination of arrhythmias that can lead to cardiac arrest. An implantable cardioverter-defibrillator (ICD), surgically placed in the heart chambers, can be monitored in the event of a fatal arrhythmia, and an electrical shock defibrillator and paced heart can be issued. This small device has been shown to save lives and is seen as an insurance measure against sudden cardiac arrest.
(1) Understanding the implantable cardioverter defibrillator (ICD)
Patients who have had an ICD implanted are told that they need to rely on medical technology to keep you safe. Therefore it is important to recognize that it may take some time for patients to regain a sense of security about their medical condition. Learning something about the purpose of ICD implantation and its function can help make patients feel more relaxed and comfortable with this device.
(2) ICD defibrillation by shock
Defibrillation with an ICD can be a devastating, upsetting and painful procedure. In fact most patients quantify it as a 6/10 pain level. It is important to establish a shock plan so that you don’t have to spend time worrying about what to do when the ICD issues a shock. If you experience one shock but feel fine afterwards, contact your health care provider as soon as possible. If you have been shocked multiple times, or if you still feel sick after a single shock, call 911 immediately. after a single shock, try to maintain a survivor’s mindset and remind yourself that the ICD is protecting me and that it is working exactly the way it should.
(3) Families of patients with ICD implants
Coping with chronic heart failure and living with an ICD can be a painful and annoying experience for the patient’s spouse and other family members. Patients’ spouses and caregivers often have more severe anxiety and depression. Psychological problems can be alleviated by training the patient’s family about the ICD and the heart.
Confidence in improving quality of life
Building confidence in chronic heart failure and the medical device carried can help improve quality of life. Others include restarting participation in physical activities, activating emotional and practical help and support.
(1) Returning to physical activity
In order to achieve the desired quality of life, it is important to return to the physical activities you enjoyed before chronic heart failure as much as possible, and it is an important opportunity to start new activities that will improve your quality of life. Walking, bicycling, socializing with friends, and joining exercise groups that support people with chronic heart failure or ICDs are all good examples of activities that can help restore life satisfaction. Taking action can have a huge impact on improving well-being. Always talk to your health care provider before participating in an activity to obtain specific guidelines for participating in a physical activity, to ensure that the activity is safe, and to take care to follow the recommended guidelines during the activity.
(2) Activate the support of others
Bring your family, friends and health care providers together to help you live with chronic heart failure. Take the initiative to talk to them about your needs, concerns and fears. By tapping into this strong social support network, the challenges of living with chronic heart failure can be greatly reduced. Engage in fun and enjoyable activities with them. Take care of yourself while encouraging your spouse or partner to take time to relax and take care of themselves. Restoring emotional closeness with your spouse or partner is equally important. If you didn’t take the time to activate your family’s support before you developed chronic heart failure, now is a good opportunity to do so.
Conclusion
It is important to believe that you, your family and friends, and your health care provider are ready for anything to manage the challenges of chronic heart failure. By consciously building confidence in the disease itself, the medical devices you carry, and improving your quality of life, you can live confidently with chronic heart failure!