Cystic Fibrosis Books Reviews

Cystic Fibrosis: A Guide for Patient and Family

Written by Dr. David Orenstein, director of one of the nation’s leading CF centers. This one-of-a-kind guide offers clear explanations and real-world advice on cystic fibrosis and its management. Patients, families, and health care professionals will find practical and reassuring information on day-to-day concerns—school, travel, exercise, nutrition, medication - as well as on physiological effects, treatments, complications, long-term issues, and prospects for a cure. The Third Edition is updated and revised throughout.

Cystic Fibrosis: The Ultimate Teen Guide (It Happened to Me)

Author: Melanie Ann Apel

Here the day-to-day dealings of life as a cystic fibrosis patient are described through a series of flashbacks to a time when the author was an 18-year-old volunteer at a cystic fibrosis overnight camp.

From diagnosis to death, this book leaves no aspect of CF untold as it includes a description of the illness; a comprehensive discussion of who gets the disease and why; an explanation of the procedures involved in diagnosing the disease; coverage of the arduous daily therapies involved in maintaining the life of a person with cystic fibrosis; and, now that people who have CF are living longer because of available therapies, the new challenges of dealing with CF-related diabetes as well as making decisions regarding lung transplants are all covered.

Understanding Cystic Fibrosis

Author: Ph.D., Karen Hopkin

This book is quite an easy introduction to cystic fibrosis and a good reference for people with CF or their families. It’s a concise read, but it is the perfect companion, if understanding and strength are the things you are seeking.

Since the discovery of the CF gene in 1989, scientists have learned a great deal about the biology of this disease which strikes one child in every 3,300 births. With the gene pinpointed, scientists are now working on ways to replace it and are developing better tests for earlier diagnosis. "Understanding Cystic Fibrosis" charts the progress that has been made in a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections.

A useful guide for families and patients.

With Every Breath: Stories by and about People Living with Cystic Fibrosis

Authors: Katherine Russell and Margot Russell

Cystic fibrosis is a life-threatening, genetic disease that affects the lungs and digestive system. Physically, fighting it is a very perilous struggle. Emotionally, coping can oftentimes be even harder.

"With Every Breath" consists of stories by and about people living with cystic fibrosis. Created to motivate, inspire, and generate positivity for those living with cystic fibrosis, this book is something you can open time and time again.

Designed for all ages, this collection of diverse stories offers unique perspectives from patients, a CF doctor and nurse, and family members of those living with the illness. Patients aren't the only ones who will want to read "With Every Breath" as family members, friends, and doctors can all find inspiration when they open it.

The stories range from overcoming challenges, understanding the disease, lung transplants, diagnosis stories, and more. The book is filled with fun artwork, uplifting quotes, and photography. Celine Dion contributed the Foreword, and there are chapters by people of all ages and walks of life. This book is sponsored by the Boomer Esiason Foundation, and all proceeds will go to cure cystic fibrosis.

David's Promise: A Young Man's Struggle with Cystic Fibrosis

Author: Kathy Sykes

What would it be like to navigate this life under the shadow of a deadly disease? How would you cope, both physically and psychologically? Approximately 30,000 people in our country live with the devastating illness, cystic fibrosis, and one in twenty Caucasians are carriers of its gene. Many among us are affected by CF, but few really know much about it.

"David's Promise" delivers an in-depth examination of a young man's life-long confrontation with cystic fibrosis. Through the fictional main character of David, the reader is given a deeply personal chance to experience love's ultimate triumph over illness.

The story explores all the complexities of David's life, and as each layer unfolds, the reader begins to look beyond David's medical diagnosis and into his heart. The young man is a teacher with a pregnant wife and a whole slew of struggles, including the implications of genetic testing, the question of abortion, and denial of medical insurance coverage in this country.

This novel does not pull any punches concerning the stark realities of cystic fibrosis, yet it was written to offer hope and understanding about an often hopeless and misunderstood disease.

Breathing for a Living: A Memoir

Author: Laura Rothenberg

It would be easy to assume that the story of Elizabeth Rothenberg's battle with cystic fibrosis is one of a brave young woman staying constantly positive in the face of tremendous adversity. But situations such as hers are rarely that simple.

Thankfully, the portrait that emerges in her memoir, "Breathing for a Living", is that of a complex and very real human being who experiences joy, anger, despair, and hopefulness while struggling to live the kind of normal life most of her fellow college students take for granted. And while her candor is admirable, what makes Rothenberg a remarkable author is her dedication to just getting words written down on the page at times when many would simply retreat from the world.

Through an agonized process of waiting for a lung transplant, she writes down exactly what she's feeling. She writes extensively as her body fights the disease and struggles to accept the new lungs. And as she is shuttled back and forth between her New York home, her academic career at Brown, and numerous emergency hospital stays, she keeps on writing.

Diagnosed with cystic fibrosis at three days old, Rothenberg spent much of her life in and out of hospital rooms so her medical knowledge is extensive and well documented. One gets the impression that staying on top of this information helped her feel at least somewhat in control of her own situation and it lends a steady gravity to her emotionally charged memoir.

The book is a pastiche of e-mails to friends, journal entries, and the occasional snapshot. It looks very much like a college kid's scrapbook, which, in many ways, it is. Rothenberg’s energetic prose is highly informal and probably more guileless than one would see from a more seasoned writer. But that intimacy and simplicity adds to the charm and, as Rothenberg's health deteriorates, the heartbreak as well. By the end of "Breathing for a Living", the reader loses a friend but, gains a greater appreciation of what it means to live. -- John Moe, Amazon Review

The Spirit of Lo : An Ordinary Family's Extraordinary Journey

Authors: Terry Detrich and Don Detrich An ordinary family is faced with an extraordinary challenge, a child with cystic fibrosis. This is their story, rich and moving, as they laugh and cry and learn and grow. Their love, faith, and commitment to each other carry them through battles with depression, anger, despair, and the ravages of the disease as they join a race with death for a cure. What emerges is "THE SPIRIT OF LO", which enables the family and their community to face each new day of life's dance on the edge of mortality.

The book is an honest, open sharing, infused with a spirit of overcoming the odds, one day at a time. -- The Tulsa World, October 29, 2000

This book shows us that through love and support, we can find contentment, even happiness, in spite of life’s adversities. -- Tulsa Kids, October 2000