Pulmonary Hypertension: A Patient's Survival Guide
By Gail Boyer Hayes
Pulmonary Hypertension Association
$25 for nonmembers, $15 for members
Available at http://www.phassociation.org

You'll never find a book about pulmonary hypertension on the bestseller list. Any publishing company looking for a blockbuster to compete with The South Beach Diet would steer clear of a topic that afflicts only a few thousand people around the world.

Fortunately, not all books are written with huge profits in mind. Pulmonary Hypertension: A Patient's Survival Guide merely aims to give patients the information they need to manage their disease. And it succeeds. If pulmonary hypertension were as common as cancer or diabetes or obesity, this book would surely fly off the shelves.

The book's author, Gail Boyer Hayes, was diagnosed with primary pulmonary hypertension in 1983, a time when treatment options were very limited and the outlook for patients was grim. She never discusses her own medical history, but she does offer many insights and observations that could only come from someone who has walked down this road. Who else would comment that the transducer used for an echocardiogram feels "chilly" against the chest?

Throughout the book, Hayes stresses the importance of working closely with a doctor. Unfortunately, pulmonary hypertension is so rare that many doctors don't know how to manage it. This guide is no substitute for a doctor's advice, but it does arm patients with the information they need to ask the right questions and, perhaps, steer their doctors in the right direction. For instance, the book makes it clear that many patients who currently take calcium channel blockers may need to talk to their doctors about switching to Flolan, a much more complex but potentially more effective treatment.

The exploration of current treatment options is clearly the highlight of the book. Hayes discusses every possible aspect of every medication, including costs, administration, side effects, and potentially harmful interactions. Much of the book focuses on Flolan, and rightly so. As Hayes puts it, not only is Flolan the current "gold standard" for the treatment of pulmonary hypertension, it's also "one of the most complicated medicines that patients have ever been trusted to self-administer." Hayes describes how to mix the medicine, how to insert it into the pump, and how to care for the catheter that delivers the drug into the heart. She also offers many "fashion tips" for keeping the pump secure and hidden from view.

The book offers valuable lifestyle advice, but the particulars seem a bit skimpy, especially when compared with discussions of medical treatments. Hayes goes into some detail about managing stress, but she barely mentions the importance of staying away from cigarettes or shedding extra pounds. She mentions salt several times, but she never spells out the potential risks or provides any guidelines.

References to salt are scattered throughout the book, which brings up another minor quibble: A reader who wanted to find all references to this or any other topic would have to do a lot of searching and skimming. There is no index, an unfortunate oversight for a book so packed with information.

At times, the book seems to be a little too packed. The opening chapters that describe the disease are full of scientific terms that will scare away most readers who never went to medical school. The typical patient may never really need to know that endothelin causes vasoconstriction by activating endothelin A and B receptors. (Huh?) It would be a shame if any reader gave up on this book before getting to the good stuff.

And there's plenty of good stuff to be found. Most of the book is informative, engaging, and easy-to-read. Hayes has found the right tone: She's optimistic but realistic, empathetic but not condescending. She even manages to inject plenty of humor into a decidedly unfunny topic. On the whole, it's hard to imagine a person with pulmonary hypertension getting by without this book. It may not be a bestseller, but it is a must-have.

-- Chris Woolston, MS, is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive, and was a staff writer at Hippocrates, a magazine for physicians. His reporting on occupational health for CHI earned him an award from the Northern California chapter of the Society of Professional Journalists.

First published October 30, 2003
Last updated December 5, 2007
Copyright © 2003 Consumer Health Interactive