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Living with heart failure

 

It may sound scary, but a diagnosis of heart failure does not mean the end is near. Heart failure is a poorly named and little understood condition. The heart does not really fail or stop. Instead, heart failure results when the heart is unable to pump oxygen-rich blood as well as it should.

While heart failure can’t be cured, it can be controlled, and people can enjoy good quality of life for many years after a diagnosis. In fact, the condition progresses slowly. It can be mild and cause minor symptoms, or it may be severe and even life-threatening. The most common symptoms of heart failure are shortness of breath, fatigue, leg swelling and other signs of fluid retention.

If you are diagnosed with heart failure, you are not alone. According to the American Heart Association, more than 5 million Americans, mostly older adults, have the condition. Those 40 and over have a one in five chance of developing heart failure in their lifetime. As people live longer, the risk of heart failure increases. Other risk factors include diabetes; cardiovascular disease, including high blood pressure, heart attack and arrhythmia; and drug or alcohol abuse.

It is important for those with heart failure to learn as much as possible about their condition and the treatments that are available to them. A good place to start is a new book by Edward K. Kasper, M.D., and Mary Knudson, “Living Well with Heart Failure: The Misnamed, Misunderstood Condition” (Johns Hopkins University Press, 2010). Knudson is a journalist with heart failure and Kasper is the physician who helped her learn to cope with her condition.

From the perspectives of patient and doctor, readers learn about the science behind heart failure, how it happens, how it manifests and how it is diagnosed and treated. Lifestyle issues, such as diet and exercise, are discussed, showing readers how to take control and create a healthier life.

Treatments for heart failure range from drugs to surgery, including implantable defibrillators, pacemakers and heart transplantation. All are discussed in the book. The final chapter, “Where to Find More Information,” lists scientifically sound Web sites, medical journals and textbooks that help those with heart failure become the best possible advocates for themselves.

Advances in medical knowledge have improved the lives of people with heart failure, but often it is simple day-to-day care at home that makes the most difference. Caring for a person with heart failure can be challenging though, and requires special knowledge. Fortunately, there is a book written for home caregivers. “The Comfort of Home for Chronic Heart Failure: A Guide for Caregivers” (CareTrust Publications, 2009) outlines best practices for home-based care and answers real-life questions.

Divided into three parts, the book first describes types of heart failure and how they affect the people who have them. Part two provides the tools to craft an effective plan for living with heart failure. Part three includes a glossary of heart-failure terminology, Internet resources and references for further reading.

Beyond practical tips to help the patient with things like physical activity, diet, handling emergencies and communicating with medical personnel, there is important information to help the caregiver cope. A chapter on avoiding caregiver burnout lists caregiver support organizations.

The book is well organized, easy to understand and a must-read for anyone caring for someone with heart failure.

These books, along with other pertinent books and videos, are on the shelves of Stanford Health Library. For more information, contact Stanford Health Library in person or via telephone or e-mail. Research assistance and customized information packets are available free of charge.

Stanford Health Library is free and open to the public. The library is now open in five locations: Stanford Shopping Center near Bloomingdale’s; on the third floor of Stanford Hospital; on the main level of Stanford’s Cancer Center; in South Palo Alto on the campus of the Taube Koret Center for Jewish Life at 3921 Fabian Way; and at the Ravenswood Family Health Center, 1807 Bay Road, East Palo Alto.

For more information, call 725-8400, e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. or visit healthlibrary.stanford.edu.

Nancy Dickenson is head librarian at Stanford Health Library.

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