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Gail Boyer Hayes - Pulmonary Hypertension: a Patients Survival Guide:, 2013 Revision

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Gail Boyer Hayes Pulmonary Hypertension: a Patients Survival Guide:, 2013 Revision
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Pulmonary Hypertension: a Patients Survival Guide:, 2013 Revision: summary, description and annotation

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Pulmonary Hypertension: A Patients Survival Guide is a a soup-to-nuts guide for pulmonary hypertension (PH) patients and their loved ones that covers topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues. Written by a PH patient for fellow patients, this valuable resource is medically updated every year to keep up with the cutting-edge research and developments in the pulmonary hypertension field.

Author Gail Boyer Hayes wrote the Survival Guide to help answer the questions that a newly diagnosed patient and his or her loved ones may have after leaving the doctors office with a PH diagnosis. The book explains the disease process, presently available treatments, and promising new treatments that may be available in the not-too-distant future.

The book also frankly discusses difficult subjects like life expectancy, the risks of various treatments, and how PH can sometimes be inherited. Anecdotes about how other PH patients have coped with difficult situations and suggestions on how to make patients and caregivers lives easier are included, as are suggestions on getting insurance coverage and free legal help in dealing with government agencies. For those who want to explore beyond the covers of the book, there are descriptions of helpful organizations, websites, PH drug companies and more.

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Acknowledgments Credits Illustration in Chapter 2 Copyright 2002 Mayo - photo 1

Acknowledgments & Credits

Illustration in Chapter 2: Copyright 2002 Mayo Foundation for Medical Education and Research. All rights reserved. Used with permission from the Mayo Clinic Health Letter newsletter. Figure in Chapter 5: Oudiz, R.J. and H.W. Farber, "Dosing Considerations in the Use of Intravenous Prostanoids in Pulmonary Arterial Hypertension: An Experience-based Review," American Heart Journal, 157 (4) (625-635) April 2009, with permission from Elsevier. Figures (3) in Chapter 8: Stehlik, J., et. al., "The Registry of the International Society for Heart and Lung Transplantation: 29th Adult Lung and Heart-Lung Transplant Report 2012," The Journal of Heart and Lung Transplantation, Vol. 31, Issue 10 (1073-1086), October 2012, with permission from Elsevier. Chapter 9, Figure 1: D'Alonzo, Gilbert E., et. al. "Survival in Patients with Primary Pulmonary Hypertension: Results from a National Prospective Registry," Annals of Internal Medicine, Vol. 15, No. 5 (343-349), September 1991. Figures in Chapter 9: Figures 2, 3, 4, 5: Benza, R.L., et. al. "An Evaluation of Long-term Survival From Time of Diagnosis in Pulmonary Arterial Hypertension From the REVEAL Registry," Chest, 142(2) (448-456), August 2012. Copyright 2012 American College of Chest Physicians. Chapter 9, Figure 6: Benza, R.L.,M. Gomberg-Maitland, et. al., "Prognostic Factors Associated with Increased Survival in Patients with Pulmonary Arterial Hypertension Treated with Subcutaneous Treprostinil in Randomized, Placebo-Controlled Trials," The Journal of Heart and Lung Transplantation, Vol. 30, No. 9 (982-989), September 2011. Chapter 9, Figure 7: Miyamoto, S., et. al., "Clinical Correlates and Prognostic Significance of Six-Minute Walk Test in Patients with Primary Pulmonary Hypertension," American Journal of Respiratory and Critical Care Medicine, Vol. 161, No. 2 (487-492), February 2000. 2000 The American Thoracic Society. Chapter 9, Figure 8: Nagaya, N, et. al., "Plasma Brain Natriuretic Peptide as a Prognostic Indicator in Patients With Primary Pulmonary Hypertension," Circulation, 102 (865-870), 2000. Copyright 2000 American Heart Association, Inc. All rights reserved. Chapter 9, Figures 11 and 12: Benza, R.L., et. al., "The REVEAL Registry Risk Score Calculator in Patients Newly Diagnosed With Pulmonary Arterial Hypertension" Chest, 141 (354-362), February 2012. 2012 American College of Chest Physicians. Chapter 9, Figure 13: Benza, R.L., et. al., "Predicting Survival in Pulmonary Arterial Hypertension : Insights From the Registry to Evaluate Early and Long-Term Pulmonary Arterial Hypertension Disease Management (REVEAL)," Circulation, 122, 2 (164-172), June 2010. Copyright 2010 American Heart Association, Inc. All rights reserved. Figure in Chapter 10: Benden, C. et al., "The Registry of the International Society for Heart and Lung Transplantation: Fourteenth Pediatric Lung and Heart-Lung Transplantation Report 2011," Journal of Heart and Lung Transplantation, Vol. 30, Issue 10 (1123-1132), October 2011, with permission from Elsevier. The Revised Clinical Classification of Pulmonary Hypertension chart in Chapter 3 was updated at the 4th WHO World Symposium on PAH in Dana Point, California. This material appeared in an article by Gerald Simonneau, MD, in the Journal of American College of Cardiology, June 2009. Copyright 2009, with permission from Elsevier. For the original Third Edition, Chest gave PHA special permission to use material in advance of publication (July 2004) for their guideline: "Diagnosis and Management of Pulmonary Arterial Hypertension: ACCP Evidence-Based Clinical Practice Guideline."

Conflict of interest disclosure statements for each of the medical professionals who contributed to the chapters revised for this Fifth Edition, 2013 Revision can be found in the Acknowledgments section.

AUTHOR: GAIL BOYER HAYES

Gail Boyer Hayes was diagnosed with IPAH in 1983 and treated with CCBs from - photo 2

Gail Boyer Hayes was diagnosed with IPAH in 1983, and treated with CCBs from 1993 to the present. Formerly a magazine editor, speechwriter, TV talk show hostess, book reviewer and lawyer, and now a writer/editor, she has served on PHAs Board of Trustees. Gail lives in Seattle with her husband Denis. They are presently co-authoring a book about cows, which is really about a lot more than cows.

MEDICAL EDITOR: RON OUDIZ, MD

Ron Oudiz MD is Professor of Medicine at the David Geffen School of Medicine - photo 3

Ron Oudiz, MD, is Professor of Medicine at the David Geffen School of Medicine at UCLA, Director of the Liu Center for Pulmonary Hypertension, and Clinical Director of the Wasserman Cardiopulmonary Exercise Laboratory at Harbor-UCLA Medical Center in Torrance, Calif. He was introduced to PH by Bruce Brundage, MD, in the early 1990s and owes the success of the Harbor-UCLA PH Clinic to Bruce, as well as to his caring and giving coordinators, Joy, Daisy and Meghan. He "volunteered" to be the medical editor of the Survival Guide and shares in the pride of contributing to this work. Ron's beautiful wife and two wonderful young children keep him going as chapters keep rolling in for review. In 2011, PHA awarded him with the Physician of the Year Award.

Dr. Oudiz has served as a consultant/advisory board/steering committee member for Actelion Pharmaceuticals, Bayer HealthCare, Gilead Sciences, Ikaria, Lung LLC, Novartis Pharmaceuticals and United Therapeutics Corporation. He has also served on a speaker's bureau for Gilead Sciences and United Therapeutics Corporation, and has received institutional grant/ research support from Actelion Pharmaceuticals, Bayer HealthCare, Gilead Sciences, Ikaria, Lung LLC, Pfizer and United Therapeutics Corporation.

COVER ARTIST: MICHELLE SMITH

Michelle Smith was diagnosed with a PH due to a congenital heart defect prior - photo 4

Michelle Smith was diagnosed with a PH due to a congenital heart defect prior to her first birthday. She remained essentially asymptomatic until her late twenties when her PH started to worsen and she had to "retire" from the career that she loved as a graphic artist, illustrator and website designer. Needing a creative distraction, Michelle learned to paint with watercolors, and that has been her passion ever since. Her paintings have won awards and been juried into several local and national art shows. You can view more of her artwork on her website: www.sketchycharacters.com . Michelle's PH has been treated with epoprostenol since 1999. She lives with her husband and two delightful dogs in the beautiful San Francisco Bay Area.

MEDICAL WRITERS AND REVISERS

SURVIVAL GUIDE, FIFTH EDITION, 2013 REVISION

These medical professionals volunteered their time to update the following chapters with the latest medical research and to ensure the information presented here is accurate.

CHAPTER 4: CONVENTIONAL MEDICAL TREATMENTS

Martha Kingman FNP-C DNP is a Family Nurse Practitioner in the pulmonary - photo 5

Martha Kingman, FNP-C, DNP, is a Family Nurse Practitioner in the pulmonary hypertension clinic at the University of Texas Southwestern Medical Center in Dallas. Martha is an active member of the PH Professional Network, having previously served on the national conference planning committee, has chaired the Research and Publications Committee of the Pulmonary Hypertension Association and currently participates in the Membership Committee. She currently serves on the Editorial Board of Advances in Pulmonary Hypertension, PHAs medical journal. Martha has published in the area of pulmonary hypertension and has spoken at local and national conferences. Her main area of research interest involves the safety of intravenous prostacyclins in the hospital setting.

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