Living a Healthy Life with HIV
304
Living a Healthy Life with HIV
304eBookFourth edition (Fourth edition)
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Overview
Product Details
| ISBN-13: | 9781936693948 |
|---|---|
| Publisher: | Bull Publishing Company |
| Publication date: | 01/12/2016 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 304 |
| File size: | 12 MB |
| Note: | This product may take a few minutes to download. |
About the Author
Read an Excerpt
Living a healthy life with HIV
By Allison R. Webel, Kate Lorig
Bull Publishing Company
Copyright © 2016 Bull Publishing Company and The Board of Trustees of the Leland Stanford Junior UniversityAll rights reserved.
ISBN: 978-1-936693-94-8
CHAPTER 1
Overview of HIV and Self-Management
NOBODY WANTS TO HAVE HIV, but just because you have HIV doesn't mean life is over. Far from it! We wrote this book to help people with HIV explore healthy ways to live the life they want.
This may seem like a strange concept. How can you have an illness like HIV and still live a healthy life? To answer this, we need to look at what happens with most chronic (long-term) health problems. These diseases — whether HIV, heart disease, diabetes, depression, bipolar disorder, emphysema, or any one of a host of others — cause most people to experience symptoms such as fatigue and often to lose physical strength and endurance. They may cause emotional distress, such as frustration, anger, fear, or a sense of helplessness. Health is soundness of body and mind, and a healthy life is one that seeks that soundness. Therefore, a healthy way to live with a chronic health problem is to overcome the physical, mental, and emotional problems caused by the condition.
Can people with HIV live healthy lives? Of course. HIV is a chronic disease like many others. For people with HIV, there are more treatments available now than ever before. The challenge is to learn how to function at your best regardless of the difficulties life presents. The goal is to achieve the things you want to do and to get pleasure from life. That is what this book is all about.
Remember, times have changed. When we wrote the first edition of this book in the early 1990s, the dream of HIV being considered another chronic illness was just that — a dream. Today it is a reality. Most people in treatment for HIV can and do live full, active lives for many, many years. With proper diagnosis and treatment, HIV has become a chronic condition similar to diabetes or heart disease. This is a big step forward.
Although we all celebrate this advance, it has brought with it many new questions. How do I balance my medication and my quality of life? I look and feel healthy — so who should I tell that I have HIV? This book will help you answer these and many other questions.
Before we go any further, let's talk about how to use this book. Throughout this book, you will find information to help you learn and practice self-management skills — that is, being proactive about living with your condition. This is not a textbook; rather, you might think of it as a reference book. You do not need to read every word in every chapter. Instead, read the first two chapters and then use the table of contents to find the specific information you need. You may want to start with some background information about HIV and its symptoms and treatments. Or you may want to start by learning about exercise, healthy eating, and stress reduction. Anyone with HIV may find it useful to know how to figure out whether a new symptom is a common "bug" or an urgent condition that needs to be checked out by the medical team. Feel free to skip around and to take notes right in the book. This will help you learn the skills you need to live a healthy life with HIV.
You will not find any miracles or cures in these pages. Rather, you will find tips, ideas, and resources about how to become an HIV self-manager and live your life better. This advice comes from physicians, nurses, psychologists, other health professionals — and, most importantly, from people like you who have learned to positively manage living with their HIV.
In this chapter, we discuss HIV as a chronic illness, as well as pointing out some of the most common problems caused by this disease. You will soon see that the problems and self-management skills of those with HIV have a lot in common with other chronic illnesses — more than you might think. Therefore, learning skills for managing chronic illness allows you to successfully manage not only HIV but other health conditions — and even life — as well. We hope the book gives you the tools you need to become a great manager of your HIV and all other aspects of your life.
What Exactly Is a Chronic Health Condition?
Health problems can be characterized as either and "acute" or "chronic." Acute health problems usually begin suddenly, have a single cause, are often quickly diagnosed, last a short time, and get better with medication, medical treatment, rest, and time. Sometimes, as in the early days of HIV, acute conditions can end in death. But most people with acute illnesses are cured and return to normal health. There is usually relatively little uncertainty for the patient or the doctor; both usually know what to expect. The illness typically follows a cycle of getting worse for a while, responding to careful treatment after observing the symptoms, and then getting better. Finally, the care of acute illness depends on the body's ability to heal itself and sometimes on a health professional's knowledge and experience in finding and administering 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, once established by examination, 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 (see Table 1.1). They usually begin slowly and proceed slowly. For example, a person may slowly develop blockage of the arteries over decades and then might have a heart attack or a stroke. Arthritis generally starts with brief annoying twinges that gradually increase. Unlike acute disease, most chronic illnesses usually have multiple causes that vary over time. These causes may include heredity, lifestyle (smoking, lack of exercise or sleep, poor diet, stress, and so on), and exposure to environmental factors such as secondhand smoke or air pollution and to physiological factors such as low levels of thyroid hormone or changes in brain chemistry that may cause depression.
Although HIV is a chronic condition, it has characteristics of both acute and chronic illness. Its beginning is slow and it usually lasts for life. We do know the specific cause, the HIV virus, which can be identified by specific blood tests. Therefore, diagnosis of HIV is usually relatively clear, and tests, especially for HIV viral load, can be very helpful in selecting and maintaining medications. (We will talk more about viral load tests in Chapter 7, "Making Treatment Decisions.") The roles of the patient and the health care provider are similar to the roles for any other chronic condition.
HIV in many ways is quite similar to other chronic diseases, such as heart disease, stroke, and diabetes. Like them, HIV is sometimes interrupted by acute flares or episodes of worsening symptoms. For example, a person with HIV may experience such daily symptoms as fatigue, and then have a brief, acute episode of pneumonia that needs to be diagnosed and treated. Knowing the difference between the acute and chronic conditions associated with HIV is quite important, because the acute conditions can sometimes be infections (referred to as "opportunistic" infections) that need special treatment. Today, with increased use of medications to treat HIV, it is also important to know the difference between drug side effects and HIV symptoms.
The many causes and unknown factors of chronic conditions can be frustrating for those of us who want quick answers. It is difficult for both the doctor and the patient when clear answers aren't available. In some cases, even when diagnosis is rapid, as in the case of a stroke, heart attack, or HIV, the long-term effects may be hard to predict. The lack of a regular or predictable pattern is a major characteristic of HIV and most other chronic illnesses.
Unlike acute disease, where full recovery is expected, chronic illness often leads to more symptoms and loss of physical or mental functioning. With chronic illness, many people assume that the symptoms they are experiencing are due to the disease itself. Although the disease can certainly cause pain, shortness of breath, fatigue, and the like, it is often not the only cause. What's more, each of these symptoms can contribute to the other symptoms, and they can feed on each other. For example, depression causes fatigue, fatigue and pain can cause physical limitations, and physical limitations can lead to poor sleep, more fatigue, more pain, and more depression. The interactions of these symptoms make the condition worse. It becomes a vicious cycle that only gets worse unless we find a way to break the cycle (see Figure 1.1 on the next page). One of the challenges of living with HIV is dealing with this cycle.
Throughout this book, we examine ways of breaking the cycle and getting away from the problems of physical and emotional helplessness.
Another way in which chronic illness differs from acute illness is that chronic illnesses such as heart disease, diabetes, and HIV 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. We discuss medications at length in Chapter 8, "Managing Medications for HIV," and Chapter 9, "Side Effects of Medications."
Managing medications is just one part of self-management. Before discussing HIV in more detail, it is important to briefly discuss self-management.
Same Disease, Different Response
James has HIV. He experiences fatigue most of the time and can't sleep. He took early retirement because of his HIV and now, at age 55, he spends his days sitting at home bored. He avoids most physical activity because of fatigue, weakness, and depression. He has become very irritable. Most people, including his family, don't enjoy his company. It even seems too much trouble when the grandchildren he adores come to visit.
Isabel, age 66, also has HIV. Every day she manages to walk several blocks to the local library or the park. When she feels fatigue or depression, she practices relaxation techniques and tries to distract herself. She works several hours a week as a volunteer at a local hospital. She also loves going to see her young grandchildren and even manages to take care of them for a while when her daughter has to run errands.
James and Isabel both live with the same condition and with similar physical problems. Yet their abilities to function and enjoy life are very different. Why? The difference lies largely in their attitudes toward HIV and their lives. James has allowed his physical capacities and enjoyment of life to wither. Isabel has learned to take an active role in managing her chronic illness. Even though she has limitations, she controls her life instead of letting the illness control it.
Attitude alone cannot cure chronic illness, but a positive attitude and certain self-management skills can make it much easier to live with. Much research now shows that the experience of fatigue, depression, and disability can be modified by circumstances, beliefs, mood, and the attention we pay to symptoms.
Two people with similar chronic conditions can sometimes be affected very one differently. may be able to minimize the effect of symptoms, while the other is extremely disabled. One may focus on healthy living, while the other is completely concentrated on the disease. In other words, one of the keys in shaping the impact of any disease is how effective and engaged the person is in self-management.
HIV and Self-Management
For a person with HIV, it may seem overwhelming to think about being responsible for its management. Unfortunately, there is no other way to self-manage a chronic condition.
So if you have HIV, what are your options? You can go home and do nothing. You can decide to not take medications recommended by your physician and instead use alternative treatments. You can decide to take a "vacation" from all HIV drugs and stop using them temporarily. Or you can choose to follow your doctor's treatment plan to the letter. These are all management decisions that only you can make.
In this book, we cannot tell you how to manage your HIV. 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. Using this knowledge, as well as 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. 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 Self-Manager." Now let us examine exactly what HIV is and some of the conditions that can accompany it.
Understanding HIV
HIV is a disease of the immune system caused by the human immunodeficiency virus. People infected with HIV slowly develop damage to their immune system. This usually takes months or years. When the immune damage is minimal, a person with HIV doesn't notice anything and may be perfectly healthy. 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 becomes severe, people with HIV lose the ability to fight off serious infections and even cancers.
In the next pages, we discuss how HIV is (and isn't) caught from other people and what HIV does to the immune system. Some readers may find this information frightening, but it's essential to know the basics to be an effective self-manager. As you learn the medical details about HIV, it is important to not lose track of three vital facts:
* HIV is treatable. People in treatment who self-manage well can feel better now and live long, healthy lives, more so than they ever could in the past.
* Treatments for HIV are improving all the time. They're increasingly effective and easy to take. People on treatment today have many more therapy options than ever before.
* Each person with HIV 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 you will experience side effects from anti-HIV medications just because you may know or have read about someone who did.
How Do People Catch HIV?
HIV is a virus that infects only humans. The only way HIV is transmitted is when the virus travels from inside an infected person to the bloodstream of another person. Many other viruses are different. Influenza virus (flu) concentrates in the lungs, so coughing spreads flu. Chicken pox concentrates in the skin, so touching an infected person can spread the disease. HIV is different. HIV concentrates in the blood, vaginal fluid, breast milk, and semen, and there aren't many ways to transfer these substances from one person to another.
Essentially, all the known cases of HIV infection have been transmitted in one of four ways:
* Having sex
* Injection with intravenous (IV) needles
* Transmission from a mother to her unborn child
* Transfusions of blood or blood products
Remember, you can pass on HIV to someone else in these ways even if you are infected but don't know it, even if you are taking HIV medication, and even if your HIV viral load is very low or even undetectable. (Again, you can read more about viral load tests in Chapter 7, "Making Treatment Decisions.")
Sexual Contact
There is always risk when an HIV-positive person has unprotected sex (sex without a condom) with someone who is HIV negative. The exact risk depends on what you do during sex. Unprotected anal sex is the most effective way to sexually transmit HIV. When a man with HIV puts his bare penis into another person's anus, the receiving person, whether a man or woman, is at very high risk of catching HIV. Unprotected vaginal sex is also risky. Because the virus is present in blood, vaginal fluids, and semen, it can get into the other person's blood through tiny cracks in the skin and soft tissues. Oral sex involves some risk of transmitting HIV, especially if sexual fluids enter the mouth and if there are sores in the mouth or bleeding gums. Pieces of latex or plastic wrap over the vagina, or condoms over the penis, can be used as barriers during oral sex.
There are three reasons why it is vital to practice safer sex:
* To protect other people. 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 a new, possibly more dangerous strain of HIV, such as one that is resistant to anti-HIV drugs. You will stay healthier longer if you can avoid any new HIV infection. If you have HIV, because your immune system is compromised, you are also at increased risk of getting other diseases such as syphilis, gonorrhea, and hepatitis through unsafe sex. If you get one of these diseases, your body will be less able to resist the infection and heal itself.
* Because it is doable! With the right knowledge and partner, sex can be safe, healthy, and enjoyable.
(Continues...)
Excerpted from Living a healthy life with HIV by Allison R. Webel, Kate Lorig. Copyright © 2016 Bull Publishing Company and The Board of Trustees of the Leland Stanford Junior University. 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.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Front Cover,Title Page,
Copyright Page,
Dedication,
Acknowledgments,
Contents,
1 Overview of HIV and Self-Management,
2 Becoming an HIV Self-Manager,
3 Health Problems of People with HIV,
4 Living with HIV through a Lifespan,
5 Barriers to HIV Self-Management,
6 Working with Your Health Care Team,
7 Making Treatment Decisions,
8 Managing Medications for HIV,
9 Managing Side Effects of Medications,
10 Evaluating Symptoms of HIV,
11 Understanding the Symptom Cycle,
12 Using Your Mind to Manage Symptoms,
13 Physical Activity for Fun and Fitness,
14 Healthy Eating,
15 Eating for Specific Long-Term Conditions,
16 Communicating with Family, Friends, and Everyone Else,
17 Planning for the Future: Fears and Reality,
18 Finding Resources,
Index,
Back Cover,