Few anticipated that HIV’s miraculous transformation from a death sentence to a chronic but manageable disease would happen as fast as it did. That people with HIV can expect to have a normal lifespan and live a healthy life is a testament not only to modern medicine and the invention of anti-retroviral drugs, but also to decades of research, particularly that done at the Stanford University School of Medicine’s Patient Education Research Center in California.
It was at Stanford that the concept of self-management for those living with chronic diseases was developed — and this concept forms the basis for the book, Living a Healthy Life with HIV. The authors — Allison Webel, RN, PhD, Allen L. Gifford, MD, Kate Lorig DrPH and four more — were all part of Stanford’s research and development effort. Their publication of the first edition of this book, in 1996, was a milestone with a pioneering concept: that people living with HIV have to take responsibility for their own treatment.
This most recent update — the redesigned, fourth edition — reflects the latest guidelines in medical care. Like the original, it is upbeat and informative, filled with practical information. The authors pay special attention to the challenges that people with HIV face, including lingering stigma (as demonstrated by the latest scandal involving Charlie Sheen); juggling medications, and dealing with side effects; and how to handle the myriad other health problems and lifestyle issues that may arise.
This edition is organized in an easy-to-read logical way, with topics clearly delineated, from “HIV-Related Opportunistic Infections” to “Aging and HIV” to “Your Role in Medical Decisions.” The writing is simple and renders complicated concepts far more understandable. The explanation of T-cell counts, for example, lends welcome clarity to a confusing issue:
The T-cell count is a blood test that measures the number of T cells (also called T helper cells and CD4 cells) in each microliter of blood. Because T-cells are important in fighting infections and cancers, having a low T-cell count increases the risk of illness. But T-cell counts change quite a bit, even in healthy, HIV-negative people. Many things affect the T-cell count, such as stress, sleep, time of day, the lab where the test was done and whether the patient has other infections. The T-cell count is a bit like your blood pressure. It’s important but it goes up and down, and the overall trend is more important than any single reading.
Living a Healthy Life with HIV covers all the major aspects of self-management, from dealing with opportunistic infections to working with your health care team; from how to deal with sex and pregnancy to making treatment decisions to understanding (and handling) the cycle of symptoms. There’s plenty of material on practical ways to improve health and daily life, such as reducing stress, getting exercise and eating well, communicating with family, friends and everyone else, and planning for the future.
What continues to set this book above the fray is its emphasis on self-management, and its authors’ affirmation that a person with HIV must and can control of his or her own illness and treatment. The medical establishment will not be living with you day-to-day for the next 30, 40 or 50 years, as the authors write: You are the only one who can control the outcome of your illness. This helpful, thorough and positive book certainly makes it easier.
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