Cystic Fibrosis, a Guide for Patient and Family

DESCRIPTION

This one-of-a-kind guide offers easy-to-understand explanations, advice, and management options for patients or parents of patients with cystic fibrosis. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. As one reviewer said, this book “is the only complete answer book for everyone living with the disease. It is an indispensable resource for families of children with CF, adolescent and adult patients, and physicians, nurses, respiratory therapists, and social workers involved in the care of CF patients.”

FEATURES

• Written by the director of one of the nation's leading CF centers
• Easy-to-understand illustrations
• Includes highlighted summary of each chapter
• New basic science-based treatments available now or coming soon
• New focus on newborn screening
• Offers straightforward answers to the questions most frequently asked by patients and families—what causes CF, how it affects the body systems, what pharmacological, surgical, and physical therapies are most effective, role of exercise, diet, and nutrition

TABLE OF CONTENTS

• Contributing Authors v
• Preface vii
• Acknowledgments ix
• Introduction xiii

1. The Basic Defect 1 Daniel J. Weiner, Raymond A. Frizzell, and David M. Orenstein
2. Making the Diagnosis 13 Jonathan E. Spahr, David M. Orenstein, and Daniel J. Weiner
3. The Respiratory System 21 Daniel J. Weiner and David M. Orenstein
4. The Gastrointestinal Tract 83 Douglas S. Lindblad, Daniel J. Weiner, and David M. Orenstein
5. Other Systems 103 Daniel J. Weiner and David M. Orenstein
6. Nutrition 113 Judith A. Fulton, Iris Yann, Daniel J. Weiner, and David M. Orenstein
7. Hospitalization and Other Special Treatments 135 Jonathan E. Spahr, David M. Orenstein, Daniel J. Weiner, and Louise T. Bauer
8. Transplantation 153 Geoffrey Kurland, Jonathan E. Spahr, Daniel J. Weiner, and David M. Orenstein
9. Daily Life 195 Jonathan E. Spahr, David M. Orenstein, and Daniel J. Weiner
10. Exercise 205 David M. Orenstein and Daniel J. Weiner
11. Genetics 221 Barbara Karczeski, Garry R. Cutting, and David M. Orenstein
12. The Family 235 David M. Orenstein and Daniel J. Weiner
13. The Teenage Years 245 Jonathan E. Spahr, David M. Orenstein, and Daniel J. Weiner
14. Cystic Fibrosis and Adulthood 265 Joseph M. Piliewski, David M. Orenstein, Jonathan E. Spahr, and Daniel J. Weiner
15. Death and Cystic Fibrosis 287 Elisabeth P. Dellon and David M. Orenstein
16. Research and Future Treatments 295 Christopher Penland, David M. Orenstein, and Daniel J. Weiner
17. The Cystic Fibrosis Foundation 311 Robert J. Beall

A P P E N D I C E S

• A Glossary of Terms 319
• B Medications 325
• C Airway Clearance Techniques 363
• D Some High Calorie Recipes 375
• E The History of Cystic Fibrosis 385
• F Bibliography and Resources 387
• G Cystic Fibrosis Care Centers in the United States 391
• H Cystic Fibrosis Care Centers Worldwide 411

Index 445

AUTHOR

David M Orenstein MD
Professor of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA

Jonathan E Spahr MD
Children's Hospital of Pittsburgh, Pittsburgh, PA

Daniel J Weiner MD
Children's Hospital of Pittsburgh, Pittsburgh, PA