These are only a few of the questions answered in PHA's Patient's Survival Guide. PH is a scary, complicated disease that few people, even doctors, know a lot about. When a newly diagnosed patient leaves the doctor's office, he or she most likely remembers only a small part of what the busy doctor said. What is left in the patient's mind is fear.
PHA knew something was needed that patients and their caregivers could carry home with them from the hospital or doctor's office, something reassuring and practical that was written in language they could easily understand. So in 1998 PHA published the first edition of Pulmonary Hypertension: A Patient's Survival Guide. It was an immediate best seller, and copies went to patients in many countries.
But patients requested even more information, and there was lots of encouraging new research and new drugs became available to treat PH. So in 2001, PHA issued a greatly expanded second edition (215 pages!) of the book. In 2004, with results of various clinical trials, more in-depth information on PH secondary to other diseases or conditions, an added chapter on what to eat if you have PH, and much, much more, the third edition of the Survival Guide (286!) was released.
The author, a PH patient herself, knows what it is like to live with the disease. She talked to many other patients, doctors, and researchers while writing the Survival Guide. Dr. Ronald J. Oudiz led a team of medical experts in the PH field in editing this resource for accuracy.
The Survival Guide frankly discusses difficult subjects like life expectancy, the risks of various treatments, and how PH can sometimes be inherited. But by also explaining the disease process, presently available treatments, and promising new treatments that may be available in the not-too-distant future, the book takes away much of the scariness of PH. 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 balky government agencies. An entire chapter is devoted to children and PH. For those who want to explore beyond the covers of the book, there are descriptions of helpful organizations, web sites, PH drug companies, and an index.
