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Recommended Books on Cystic Fibrosis
The Spirit of Lo : An Ordinary Family's Extraordinary Journey 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.
Breath (Golden Kite Honors (Awards)) Salz is a boy afflicted with a strange disease -- he coughs and coughs and cannot catch his breath. The only way he can stay alive is by doing things that make him an outcast: joining a coven, throwing himself into a handstand when the fits overtake him, avoiding the ale that his brothers and all the townspeople drink.
Salz lives in a time of superstition and fear, in the medieval town of Hameln. This summer his bare-bones existence has been more fearsome than ever. Salz's father and brothers are affected by horrifying fits. The rest of the townspeople are gripped by a plague of madness. And the entire town is visited by a pestilence of rats -- rats that crawl in their soup bowls, swarm in their sick beds, jump into their babies' cradles. Only Salz remains unaffected. But is that because he is innocent? Or is he the devil himself? Only Donna Jo Napoli can conjure a world like this -- so real that readers will fill their lungs with the fetid air of Hameln with every breath they take.
Alive at 25: How I'm Beating Cystic Fibrosis (Understanding Health and Sickness Series) Afflicted with cystic fibrosis since birth, doctors told Andy Lipman's parents he'd be lucky to reach age 25. Over the years, however, Andy has found strength and determination in his athletic pursuits, has surprised his doctors, and defied the medical odds. On his 25th birthday, he picked up a pen and began to write his story. Now 28, healthy, happy, and very much alive, Andy shares his bittersweet story with humor and wit.
Cystic Fibrosis This international and authoritative work, which brings together current knowledge in the field of cystic fibrosis, has become established in previous editions as a leading reference in the field. The third edition continues to provide everything that the clinician or allied health professional treating patients with cystic fibrosis will need in a single manageable volume. Thoroughly revised and updated throughout, it reflects the significant advances that have been made in the field since the second edition published in 2000. Cystic Fibrosis outlines in detail the basic science that underlies the disease and its progression, putting it into a clinical context. Diagnostic and clinical aspects are covered in depth, as are monitoring the condition and the importance of multidisciplinary care, reflected in the sections into which the new edition has been subdivided to improve accessibility. Future developments, including novel therapies, are covered in a concluding section. The clinical areas have been much expanded, with the introduction of separate chapters covering sleep, lung mechanics and the work of breathing, upper airway disease, insulin deficiency and diabetes, bone disease, and sexual and reproductive issues. A new section on monitoring discusses the use of databases to improve patient care, and covers monitoring in different age groups, exercise testing and the outcomes of clinical trials in these areas. Separate chapters are devoted to paramedical issues, including nursing, physiotherapy, psychology, and palliative and spiritual care. Throughout, the emphasis is on providing an up-to-date and balanced review of both the clinical and basic sciences aspects of the subject, and to reflect the multi-disciplinary nature of the cystic fibrosis care team. Drawing on the expertise of a team of international specialists from a variety of backgrounds, the third edition of Cystic Fibrosis will continue to find a broad readership among respiratory physicians, pediatricians, specialist nurses and other health professionals working with patients with cystic fibrosis.
Cystic Fibrosis: Medical Care This practical, easy-to-use reference book is a must have for all physicians and medical care providers who deal with cystic fibrosis patients. Keep this book on hand for consistant and quick answers you need when diagnosing, treating, and managing cystic fibrosis patients.
A Little Love Story: A Novel In A Little Love Story, Roland Merullo—winner of the Massachusetts Book Award and the Maria Thomas Fiction Award—has created a sometimes poignant, sometimes hilarious tale of attraction and loyalty, jealousy and grief. It is a classic love story—with some modern twists.
Janet Rossi is very smart and unusually attractive, an aide to the governor of Massachusetts, but she suffers from an illness that makes her, as she puts it, “not exactly a good long-term investment.” Jake Entwhistle is a few years older, a carpenter and portrait painter, smart and good-looking too, but with a shadow over his romantic history. After meeting by accident—literally—when Janet backs into Jake’s antique truck, they begin a love affair marked by courage, humor, a deep and erotic intimacy . . . and modern complications.
Working with the basic architecture of the love story genre, Merullo—a former carpenter known for his novels about family life—breaks new ground with a fresh look at modern romance, taking liberties with the classic design, adding original lines of friendship, spirituality, and laughter, and, of course, probing the mystery of love.
You're Too Wonderful To Die When his first child is stillborn, Alex Glassman, an intensive care specialist at a prestigious academic hospital, watches his seemingly perfect life crumble. He doesn t know how to console his wife, how to continue caring for critically ill patients, and how to reconcile an unsettling suspicion that he is being punished for his prior religious skepticism. Then Alex meets new patient Esme Jeffries, a freshman at University of North Carolina with cystic fibrosis, who is listed for a lung transplant. As their relationship progresses, Alex starts to appreciate Esme as a chance for redemption. This wondrous girl may allow him to re-enter the world and, in the process, to appreciate the faith he s been mocking since becoming a doctor. Through his narrator, Bomback blends the sharply crafted voice of a hard-working medical professional with the tender insight of genuine and touching human experience. This easeful portrayal of magnificent characters and their individual and collective journeys makes for a tragic yet heart-warming story of crises, faith, and miraculous every-day relationships.
Cystic Fibrosis: The Ultimate Teen Guide (It Happened to Me) 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 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.
Psychosocial Aspects of Cystic Fibrosis It is important to know that the treatment and care of those with cystic fibrosis has developed rapidly over the last decade, with a resulting increase of the number of individuals living well into adolescence and early adulthood. This book has been designed to consider the profound psychological impact of these changes for sufferers, their friends and families, and those involved in patient care. It also considers new approaches to problems that continue to be of concern to clinicians and other health professionals working in the field, including adherence to therapy, communication within families, staff burnout, education and counselling. The editorial team and choice of contributors reflect the interdisciplinary perspective and international scope of the content. We believe that this book will be an invaluable addition to the bookshelves of all health professionals and researchers with an interest in the field.
David's Promise: A Young Man's Struggle with Cystic Fibrosis 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.
© 2004-2008 Cystic Fibrosis Research Today. All Rights Reserved.
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