PHA decided, therefore, that patients needed a comprehensive reference book they could turn to for reassurance and for guidance.
PPH patient and writer/editor Gail Boyer Hayes (Seattle, WA) wrote the 123-page first edition of
|Gail Boyer Hayes|
The medical consultant was the distinguished Dr. Bruce Brundage. Andrea Rich (the wife of Dr. Stuart Rich) did the medical illustrations. Other PH patients, doctors, nurses, and family members reviewed the book prior to publication to make sure it answered the right questions and explained things in language a layperson could understand.
Chapters included: What is PH?; So How Do I Know It’s Really PH?; What Causes PH?; Treating PH; Tell Me Doc, How Long Do I Have?; Children and PH; Living with PH, and Tedious Paperwork and Legal Matters. Cost of the 123-page Guide to PHA members was $10.00.
Gail was concerned that the Guide not be slanted to curry the favor of any commercial interest. Therefore, she did not turn over the copyright to PHA until she was assured of this. (It turned out not to be an issue; PHA also wanted a Guide that patients could trust.)
The Patient’s Survival Guide was an immediate hit and flew out the door. Olsten provided PHA with $1,500 to include a copy in the new patient packets. Many doctors bought multiple copies to give out to their patients.
Few patients realized the generosity that made their low-cost orders possible. Barbara once said, “I couldn’t figure out why I was still alive after losing my daughter and my sister. The only reason I can think of is to help other people.” Barbara survived until October 2005.