Living Well with HIV & AIDS / Edition 3 available in Paperback
- Pub. Date:
- Bull Publishing Company
Based on the current care guidelines from the CDC and elsewhere, this book addresses the current emphasis on managing the side effects of HIV/AIDS such as lypodystrophy, redistribution of body fat, cardiac risks, and vulnerability to other ailments. Combining the latest medical advice with the ideas of hundreds of people living with HIV/AIDS, the book is particularly helpful for friends, family members, and others who make up the support network for anyone struggling with HIV/AIDS.
|Publisher:||Bull Publishing Company|
|Edition description:||Third Edition, Third edition|
|Product dimensions:||9.12(w) x 10.30(h) x 0.69(d)|
About the Author
Allen L. Gifford, MD, is an assistant professor of medicine at the University of CaliforniaSan Diego and at the San Diego Veteran's Affairs Medical Center. He was an AIDS physician at the University of CaliforniaSan Francisco from 1992 to 1995. Kate Lorig, RN, Dr.PH, is on the faculty of Stanford University School of Medicine and is a director of the Stanford University School of Medicine's Patient Education Research Center. Diana Laurent, MPH, is a health educator and study coordinator at Stanford University School of Medicine's Patient Education Research Center. Virginia Gonzalez, MPH, is a health educator and study coordinator at Stanford University School of Medicine's Patient Education Research Center.
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Living Well with HIV and AIDS
By Allen L. Gifford, Kate Lorig, Diana Laurent, Virginia González
Bull Publishing CompanyCopyright © 2005 Bull Publishing Company
All rights reserved.
Overview of HIV/AIDS Self-Management
Times have changed. When we first started this book in the early 1990s, the dream of HIV/AIDS becoming a chronic illness was just that — a dream. Today many, if not most, people in treatment for HIV/AIDS live with the disease for many, many years. In fact, with treatment, HIV/AIDS has become a chronic condition similar to diabetes or heart disease. This is a very big step forward. Although we all celebrate this advance, it has brought with it a host of new questions: How do I balance my medication and my quality of life? Should I go on disability — which assures me of health care — or should I continue to work or go back to work? I look healthy — so to whom should I disclose that I have HIV/AIDS?
This book may not give you all the answers you seek, but it should give you many of the tools you need to deal with HIV and get on with your life. Let's start by discussing exactly what is meant when we talk about a chronic disease or condition. To do this it is important to know how acute and chronic diseases differ and why those differences matter.
Acute and Chronic Conditions
We think of a health problem as being either "acute" or "chronic." Acute health problems usually begin abruptly with a single, easily diagnosed cause; they last for a limited time, and they often respond to a specific treatment, such as medication or surgery. Sometimes, as in the early day of AIDS, acute conditions end in death. For most acute illnesses, a cure with return to normal health is to be expected. For the patient and the doctor, there is relatively little uncertainty. One usually knows what to expect. The illness typically has a cycle of getting worse for a while, being treated, and then getting better. The care of an acute illness depends on a health professional's knowledge and experience to find and administer the correct treatment.
Appendicitis is an example of an acute illness. It typically begins rapidly, signaled by nausea and pain in the abdomen. The diagnosis of appendicitis, established by physical examination and lab tests, leads to surgery for removal of the inflamed appendix. There follows a period of recovery and then a return to normal health.
Chronic illnesses are different. They begin slowly and proceed slowly. For example, a person with arteriosclerosis ("hardening of the arteries") may have chest pains or breathing problems. Most arthritis starts with annoying little twinges, which gradually increase. Unlike acute disease, chronic illnesses often have many causes that vary over time and include heredity, lifestyle factors (smoking, lack of exercise, poor diet, stress, and so on), environmental factors, and physiological factors.
HIV/AIDS is a chronic disease and in many ways is quite similar to other chronic diseases, such as heart disease, stroke, and diabetes. Like these other diseases, HIV/AIDS is sometimes interrupted by acute infections or conditions. For example, a person with HIV may have day-in, day-out chronic symptoms of fatigue and then have a brief, acute episode of Pneumocystis pneumonia. Knowing the difference between the acute conditions and the chronic conditions associated with HIV/AIDS is quite important, because the acute conditions are sometimes infections (referred to as "opportunistic" infections) that need special treatment. Today, with increased use of medications, it is also important to know the difference between drug side effects and symptoms of HIV disease.
Chronic symptoms with multiple causes can be frustrating for those who want quick answers. It is difficult for the doctor and the patient when immediate answers aren't available. In some cases, even when diagnosis is rapid, as in the case of a stroke or heart attack, long-term effects may be hard to predict. Lack of a regular or predictable pattern is a major characteristic of most chronic illnesses — especially HIV/AIDS.
Unlike acute disease, in which full recovery is expected, chronic illness usually leads to persistent loss of physical conditioning. Because chronically ill people can tire easily, they may be unable to accomplish what they once could. They may give up recreational activities, such as walking or going to the gym, or chores like shopping, housework, and yard work. This lack of activity speeds up the process of physical deconditioning. At the same time, the loss of physical activity and uncertainty about the future can create a sense of helplessness, a feeling that little or nothing can be done to help the situation. Of course, believing that nothing can be done is a guarantee that nothing will be done, which reinforces helplessness and perpetuates the vicious cycle. A big problem in living with HIV/AIDS is dealing with this cycle of physical deconditioning (see Figure 1.1) and helplessness. Throughout this book we examine ways of breaking the cycle.
Another way in which chronic illness differs from acute illness is that chronic illnesses such as heart disease, diabetes, and HIV/AIDS often have to be treated with medications that need to be taken every day, for life. Using medications properly is a big part of living with HIV/AIDS. We discuss medications at length in Chapter 6, "Managing Medications for HIV/AIDS," and Chapter 7, "Side Effects of Medications." Managing medications is just one part of self-management. Before discussing HIV/AIDS in more detail it is important to briefly discuss self-management.
HIV and Self-Management
For a person who has a disease like HIV/AIDS, it may seem overwhelming to think about being personally responsible for its management. Unfortunately, there is no alternative to self-management of a chronic condition. What are the options? One can go home and do nothing. This is a management style. One can decide to not take medications ordered by one's physician and instead to use alternative treatments. This too is a management style. One can decide to take a drug holiday. This is a management decision. In this book, we cannot tell you how to manage your HIV/AIDS. This is up to you. What we can do is give you all the information we have, including all the tools that others have found helpful in managing their HIV/AIDS. Using this knowledge, and the tools and advice you get from health professionals, family, and friends, you will make your own management decisions. There is no one best way — only the way that works best for you — but experience shows that active self-managers do better. The bottom line is that you want to run your disease, not let your disease run you. We will talk more about self-management later in this chapter and at length in Chapter 2, "Becoming an HIV/AIDS Self-Manager." Now let us examine exactly what HIV/AIDS is, and some of the associated conditions that accompany it.
Understanding HIV and AIDS
AIDS is a disease of the immune system caused by a virus — the human immunodeficiency virus, or HIV. People who become infected with HIV slowly develop damage to their immune systems. This usually takes months, or years. When the immune damage is minimal, a person with HIV doesn't notice anything at all. If the immune damage gets worse, the person may notice swollen lymph nodes or experience certain mild infections of the skin or mouth. If the immune damage gets quite severe, people with HIV lose the ability to fight off serious infections and cancers. If one or more of these serious infections or cancers develops, or if the immune system is very weak, the person is said to have AIDS: acquired immune deficiency syndrome.
In the next pages, we discuss how HIV is (and isn't) transmitted and what HIV does to the immune system. Some readers may find this information frightening, but it's impossible to be a self-manager without having knowledge of the basics. The reality is that most people today who are in treatment for HIV/AIDS can and do live fulfilling lives. As you learn the medical details about HIV/AIDS, it is important that you not lose track of three vital facts:
HIV/AIDS is treatable. People in treatment who self-manage well can live long, healthy lives and feel better now than they ever could in the past.
Treatments for HIV/AIDS are improving all the time. People starting treatment now have many more therapy options than ever before.
Each person with HIV/AIDS has a unique experience. People can give you probabilities, but no one can say what will happen to you. For example, it's a mistake to assume that you will experience side effects from anti-HIV "cocktail" medication just because you know someone who did.
How Do People Catch AIDS?
Since AIDS is really the advanced form of infection with HIV, the real question is, "How do people catch HIV infection?" HIV infects only humans, and the only way it is transmitted is when the virus travels from inside one infected person to the bloodstream of another person. Some viruses, such as influenza (flu), concentrate in the lungs, so coughing spreads them around. Other viruses, such as chicken pox, concentrate in the skin, so touching an infected person can spread the disease. HIV is different. It concentrates in the blood and semen, and there aren't many ways to transfer blood and semen from one person to another.
Nearly all the known cases of HIV infection have been transmitted in one of the following ways:
Injection with intravenous (IV) needles
Transmission from a mother to her unborn child
Transfusions of blood or blood products
Note that you can pass HIV on to someone else even while you are taking HIV medication, and even if your HIV viral load is very low, or undetectable. (You can read more about viral load tests in Chapter 5, "Making Treatment Decisions.") If you have ever been diagnosed with HIV you can always pass it on.
It is always risky for an HIV-positive person to have unprotected sex, but exactly how risky depends on what you do during sex. Unprotected anal sex is the most effective way to transmit HIV sexually. When a man with HIV puts his bare penis into another person's anus, the receiving person, whether a man or a woman, is at very high risk of catching HIV. Unprotected vaginal sex is also risky, although maybe a bit less risky than unprotected anal sex, since less cracking and bleeding of the skin occur.
There are two reasons why it is vital to practice safer sex if you are HIV positive:
To protect other people. Obviously, you would not want to expose someone else to a serious illness.
To protect yourself. Even if you are already HIV positive, you could be infected with new, possibly more dangerous strains of HIV. You could be infected with new HIV that is resistant to anti-HIV drugs. You will stay healthier longer if you can avoid any new HIV infection. If you have HIV, you are also at increased risk of getting other diseases like syphilis, gonorrhea, and hepatitis through unsafe sex because your immune system is compromised. And if you get one of these diseases your body will be less able to resist the infection and heal itself.
There are ways you can limit the risks to yourself and to others during sexual contact. Be aware of your body, and your partner's body. Cuts, sores, or bleeding gums increase the risk of spreading HIV. Even small injuries to the skin give HIV a way to enter the body. Use a barrier like a condom to prevent contact with blood or sexual fluid. The most common artificial barrier is the latex condom for men. You can also use a female condom to protect the vagina or rectum during intercourse. Lubricants can reduce the chance that condoms or other barriers will break. Oil-based lubricants like Vaseline, oils, or creams can damage condoms and other latex barriers; be sure to use water-based lubricants. Oral sex involves some risk of transmitting HIV, especially if sexual fluids enter the mouth and if there are bleeding gums or sores in the mouth. Pieces of latex or plastic wrap over the vagina, or condoms over the penis, can be used as barriers during oral sex.
Needles and Syringes
People who use a needle and syringe (the plastic container attached to the needle) to inject drugs leave a small amount of blood in the needle or syringe. If the needle or syringe is reused by someone else without being sterilized, the first person's blood will then be injected into the next person, causing transfer of the infection if the first person has HIV.
The best way to avoid HIV infection or transmission is to not use IV drugs. If you are injecting drugs, however, be sure to always use a new syringe and needle or clean the one you have. To do this, first fill the syringe to the top with clean water, shake it, and squirt it out three times. Repeat the procedure with 100% bleach, leaving the bleach in the syringe for at least 30 seconds each time you fill the syringe. Do this three times. Finally, fill the syringe with clean water, shake, and squirt the water out. Again, do this three times.
Mother to Child
The placenta is the organ inside a pregnant woman that allows food and oxygen from the mother to go to the unborn baby. If an HIV-positive woman is pregnant, the HIV in her blood can cross the barrier of the placenta and enter her baby's blood while the fetus is still in the womb. If the mother and the baby don't receive treatment, this kind of HIV transmission will happen in about one-third of babies born to HIV-positive women, and the baby will be born infected with HIV. BUT — and this is important — if women with HIV take medications while they are pregnant and the baby also gets medication at birth, this will block passage of HIV to the baby. Thus if you are pregnant and have HIV, it is vital to get prenatal care as early as possible. If you are pregnant and not sure about your HIV status, get tested as soon as possible. Be sure to tell your doctor what your HIV status is. Your baby's future health depends on you.
HIV can also pass from mother to baby in breast milk, although this means of transmission is much less common. In places like North America and Europe with access to safe alternatives to breast milk, most doctors recommend that women with HIV not breast-feed their babies. However, if baby formula and clean water are not available, breast milk may be the healthiest option for feeding your baby, even if you have HIV.
Blood transfusions were an important source of HIV transmission until the blood test for HIV became available in 1985. Before 1985, blood banks couldn't tell which of the blood units they received had HIV and were therefore dangerous to give to others. Now the risk of getting HIV from a blood transfusion is extremely low.
Other Possible Ways to Catch AIDS
Everyone agrees how risky it is to have unprotected sex or to share dirty injection needles, but certain other activities are harder to be sure about. Kissing deeply with exchange of saliva is a good example of an activity people may have questions about. Saliva contains extremely low amounts of HIV, so infection from saliva is unlikely. Also, saliva has natural properties that limit the power of HIV to infect. But because of sores, bleeding gums, and bites, blood in the mouth is common and not always easy to detect. In theory, this blood could transmit HIV. In practice, no case of HIV infection has ever been proven to be caused by kissing.
What Does HIV Infection Do?
People who are infected with HIV experience a slow deterioration of their immune system. The immune system is vital to proper functioning of the human body, and that's why people with HIV infection can have so much trouble. The human immune system has many different components: There are infection-fighting white blood cells; there are messenger chemicals that signal parts of the system to turn on and off depending on what invader is causing problems; there are natural human toxins ("killer" chemicals) that can destroy invading organisms; and there are proteins that can "tag" invaders, making them more vulnerable to attack by the rest of the immune system. All parts of the immune system are important, but HIV attacks one part of the immune system in particular — a type of white blood cell known as the T cell (also called the T helper, T4, or CD4+ cell). People with HIV/AIDS have problems with specific types of infections and cancers that are controlled by normal T cell function. You can read more about monitoring T cells in Chapter 5, "Making Treatment Decisions."
HIV can also infect brain cells, cells inside the bones (the bone marrow), and cells in the lining of the intestines. Because of the effect on brain cells, some people with advanced AIDS develop confusion and memory problems. Because blood cells are made in the bone marrow, the effect of HIV on the bone marrow can lead to decreased blood count (anemia). Chronic problems with diarrhea may come from the effect of HIV on the intestines.
Excerpted from Living Well with HIV and AIDS by Allen L. Gifford, Kate Lorig, Diana Laurent, Virginia González. Copyright © 2005 Bull Publishing Company. Excerpted by permission of Bull Publishing Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
How to Use this Book,
Part One: HIV/AIDS Self-Management,
Chapter One Overview of HIV/AIDS Self-Management,
Chapter Two Becoming an HIV/AIDS Self-Manager,
Chapter Three Health Problems of People with HIV/AIDS,
Part Two Managing Your Medical Treatment,
Chapter Four Working with Your Doctor,
Chapter Five Making Treatment Decisions,
Chapter Six Managing Medications for HIV/AIDS,
Chapter Seven Side Effects of Medications,
Part Three Managing Symptoms and Long-Term Health,
Chapter Eight Evaluating Common Symptoms of HIV/AIDS,
Chapter Nine Understanding the Symptom Cycle,
Chapter Ten Using Your Mind to Manage Symptoms,
Part Four Managing Exercise and Diet,
Chapter Eleven Exercising for Fun and Fitness,
Chapter Twelve Healthy Eating Chapter Thirteen Food Safety and Preparation Tips,
Part Five Managing Personal and Practical Issues,
Chapter Fourteen Communicating,
Chapter Fifteen Making Your Wishes Known: Advance Directives,
Chapter Sixteen Planning for Now and the Future,
Chapter Seventeen Finding Resources,