In many ways, Pulmonary Hypertension: A Patient’s Survival Guide, the brainchild of author, organizer and PH patient Gail Boyer Hayes, is a lifeline for her fellow members of the PH community – providing information, answers, comfort and hope.
Gail’s untiring efforts produced the first three complete editions of the book, but recently, a new system has been implemented to ensure that the guide remains relevant and up-to-date for PH patients in the United States and around the world.
As of fall 2007, updates to the guide have been tackled by teams of allied health professional and patient writers, with the support and leadership of Medical Editor Dr. Ron Oudiz (Liu Center for Pulmonary Hypertension at Harbor-UCLA Medical Center) and his colleagues, all renowned in the field of PH. PHA plans to issue two updates to the guide each year, the first of which was printed in September 2007.
Month of Survival Guide Reprint |
Chapter(s) to be Updated |
March 2008 |
Chapter 5: “PH Drugs” |
September 2008 |
Chapter 7: “Tell Me Doc, How Long Do I Have?” |
March 2009 |
Chapter 2: “PH – The Other High Blood Pressure” & Chapter 3: “Who Gets PH?” |
September 2009 |
Chapter 4: “Treatments – The Basics” & Chapter 13: “Tedious Paperwork and Legal Matters” |
March 2010 |
Chapter 1: “How Do I Know I’ve Really Got PH?” |
September 2010 |
Chapter 10: “Dealing with Emergencies, Doctors, Colds, and Flu” |
March 2011 |
Chapter 5: “PH Drugs” |
September 2011 |
Chapter 12: “The Active Life – Working, Exercising, Travelling, Living” |
March 2012 |
Chapter 6: “Surgical Treatments” |
September 2012 |
Chapter 8: “Children and PAH” |
March 2013 |
Chapter 9: “What to Eat When You Have PH” |
September 2013 |
Chapter 11: “You’re Not the Only One with the Blues” |
* Please note that the schedule and the order in which chapters are revised are subject to change.
A well-deserved and warm “thank-you!” goes to:
Gail Boyer Hayes, for her wisdom, guidance, and assistance during the time of transition for the Survival Guide.
Ron Oudiz, M.D., for providing first-rate assistance in his role as the guide’s Medical Editor.
Members of our medial and patient writing teams, who have made a huge commitment to prepare for and write thorough revisions to the guide’s chapters (many of whom have already lived out their commitment!): Glenna Traiger, RN, MSN; Juliana Liu, RN, MSN, ANP; Paula Patty; Michele Gilbert, NP; Lian Latham, BA, RN; Lisa Wheeler, MT; Martha Kingman, NP; Joan Zhang, RN; Candy Rick, RN; Kelly Chin, MD.
Our medical reviewers, for supporting Dr. Oudiz in his role and for providing extra sets of eyes to check revisions: David Badesch, MD (U. of Colo.); Robyn Barst, MD; Joy Beckmann, RN, MSN (Harbor-UCLA); Todd Bull, MD (U. of Colo. Health Sciences Center); Aimee Doran, RN, CPNP (U. of Colo.); Gregory Elliott, MD (U. of Utah); Alfred P. Fishman , Prof. of Med. (U. of Pa. Health System); Adaani Frost, MD (Baylor Coll. of Med.); Sean Gaine, MD (Mater Misericordiae Hospital, Dublin, Ire.); Nazzareno Galiè , MD (U. di Bologna, It.); Nicholas Hill, MD (Tufts-N.E. Med. Center); Marc Humbert, MD (Hôpital Antoine Béclère, Clamart, Fr.); Dunbar Ivy, MD (U. of Colo.); Abby Krichman, RRT (Duke U. Med. Center); David Langleben, MD (Jewish General Hosp., Montreal, Can.); James E. Loyd, MD (Vanderbilt U. Med. Center); Michael McGoon, MD (Mayo Clinic, Rochester); Valerie McLaughlin, MD (U.of Mich.); John H. Newman, MD (Vanderbilt U. Med. Center); Horst Olschewski , MD (Justus-Liebig U., Ger.); Harold I. Palevsky, MD (U. of Penn. School of Med.); Stuart Rich, MD (U. of Chicago Hosp.); Marlene Rabinovitch, MD (Stanford U.); Ivan Robbins, MD (Vanderbilt U.); Lewis J. Rubin, MD (U. of Calif. at San Diego); Cathy J. Severson , RN, BSN (Mayo Clinic, Rochester); Shelley Shapiro, MD (UCLA); Victor Tapson, MD (Duke U. Med. Center); and Allison Widlitz, PA (N.Y. Presby. Hosp.).
**You could become part of the process too! If you are a PH patient with strong writing skills and are interested in the role of patient writer for the Survival Guide, please contact Jessica at guidewriters@PHAssociation.org. 
