Living with HIV This page intentionally left blank Living with HIV A Patient’s Guide MARK CICHOCKI, RN McFarland & Company, Inc., Publishers Jefferson, North Carolina, and London LIBRARY OF CONGRESS CATALOGUING-IN-PUBLICATION DATA Cichocki, Mark, 1961– Living with HIV : a patient’s guide / Mark Cichocki, RN. p. cm. Includes bibliographical references and index. ISBN 978-0-7864-3921-8 softcover : 50# alkaline paper 1. HIV-positive persons. 2. AIDS (Disease)—Patients. 3. Self-care, Health. I. Title. RA643.8.C53 2009 616.97'92—dc22 2009008041 British Library cataloguing data are available ©2009 Mark Cichocki. All rights reserved No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying or recording, or by any information storage and retrieval system, without permission in writing from the publisher. Cover photographs ©2009 Shutterstock Manufactured in the United States of America McFarland & Company, Inc., Publishers Box 611, Je›erson, North Carolina 28640 www.mcfarlandpub.com To my wife Bobbi and children Amanda, Ashely, Lindsay, and Brandon. They supported me in my efforts, showed confidence in my abilities, and provided love throughout the process. This page intentionally left blank Contents Introduction—Why Is This Book Needed? 1 1. The History of HIV and AIDS 5 2. HIV Prevention and Testing 19 3. HIV 101 ... The Basics 34 4. The Test Is Positive ... Now What? 43 5. Your First Visit to the Doctor 58 6. Monitoring Your Health 65 7. Know Your HIV Medications 79 8. Opportunistic Infections 102 9. Associated Conditions 119 10. Treating the Whole Person 141 11. Substance Use and Abuse 159 12. Dental Care 179 13. Exercise and Nutrition 193 14. Living with HIV 213 Bibliography 239 Index 245 vii This page intentionally left blank Introduction—Why Is This Book Needed? Judith Rabkin, PhD., author of the book Good Patients, Good Doctors, summed it up in one sentence: “The patient’s first major task after learning he or she is HIV positive is self-education.” Self-education not only enables people to go on with their lives, but allows them to make informed decisions regarding their own HIV care and empow- ers them, making them critical members of the healthcare team and, in a sense, a part of the HIV scientific community. Historically, medical information was solely the domain of physicians, healthcare professionals, and scientists. The doctor was in charge, and the patient submitted to the physician’s recommendations and orders. Take, for instance, the term compliance. Fifteen years ago, doctors would prescribe a therapy and then monitor how compliant the patient was with respect to that therapy. By definition, to comply means to conform to someone’s wishes. Sim- ply put, the patient was expected to conform to the doctor’s decision, regard- less of his or her own wishes. Times have changed, and today medicine is no longer just for the physi- cian. People living with HIV are at the grassroots of a movement that has taken the hierarchy out of the doctor-patient relationship. Patients and doctors now work together as equals in developing care plans, assessing needs, and creating treatment regimes that meet the common goals of patient and medical profes- sional. Take our example from the previous paragraph. Today, patients no longer comply with their doctors’ wishes; they adhere to a given therapy. Web- ster’s Online Dictionary defines the word adhere as the action of joining or uniting. Today doctors and patients unite or work together to develop care plans and medication therapies for the person living with HIV. This partner- ship is possible because of the determination and desire of patients to learn about their HIV. People living with HIV and AIDS are dedicated to the process of self-education. 1