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Taking Cystic Fibrosis to School (by Cynthia S. Henry, Tom Dineen (Illustrator)). Paperback – 32 pages (September 2000) JayJo Books; ISBN: 1891383094   Even though Jessie has cystic fibrosis, she can still attend school and do many of the same things as her classmates. Written from Jessie’s perspective, this book explains and educates her classmates about her condition. Jessie explains to her classmates what cystic fibrosis is and tells them that it feels like “elephants dancing on her chest.” She has to cough a lot, but she explains how it actually helps her. Jessie shows the class how her parents help her to keep her lungs clear. Designed to help kids better understand their classmates with cystic fibrosis, this brightly illustrated picture book also educates families, teachers, school nurses, parents, and caregivers. A quiz for kids and tips for teachers are included.
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Blow the House Down: The Story Of My Double Lung Transplant (by Charlie Tolchin). Size: 6 x 9, 264 pages, iUniverse.com; ISBN: 0-595-00558-6   What is it like to receive a life-saving organ transplant? On April 13, 1997, I received new lungs. Blow the House Down details my story. It illustrates how Cystic Fibrosis affected my life and how I fought it. This book reflects the immense generosity of so many people, including my donor and her family; my family and friends; people who donate to Cystic Fibrosis research and drive major scientific breakthroughs; and doctors, nurses, and physical therapists who toil hard day in and day out to restore our health. Together, we each have the power to cure disease.
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Cystic Fibrosis (Health Watch) (by Susan Dudley Gold). Enslow Publishers, Inc.; ISBN: 0766016552 August 2000,  Reading level: Ages 9-12
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The Spirit of Lo (by Terry and Don Detrich) A first-person account by the parents of a girl with Cystic Fibrosis.  In Stock/Readily Available.
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My Heart is Full of Wishes (by Joshua Grishaw, Lane Yerkes (Illustrator)) A first-person account by a person with Cystic Fibrosis. Reading level: Ages 4-8; Raintree/Steck-Vaughn Publish-A-Book; February 2000,  In Stock/Readily Available.
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Herbal Antibiotics : Natural Alternatives for Treating Drug-Resistant Bacteria (Storey Medicinal Herb Guide) (by Stephen Harrod Buhner) Paperback – 128 pages (September 1999) Storey Books; ISBN: 1580171486. In response to mounting evidence of an increase in antibiotic-resistant strains of bacteria, scientists around the world are studying the effectiveness of using herbs such as garlic, echinacea, grapefruit seeds extract, licorice, onion, red clover, St. John’s wort, and others. In easily accessible language, Herbal Antibiotics presents all the current information about the major antibiotic resistant microbes and the herbs that are most effective in fighting them.   In Stock/Readily Available.
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Between Husbands and Friends (by Nancy Thayer) Hardcover – 241 pages (August 25, 1999) St Martins Press (Trade); ISBN: 0312206135.   Hardcover In Stock/Readily Available.
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Information You Should Know About Lung Transplantation: Before, During and After. (by Karen A Couture) soft cover – 130 pages written by an individual who has been there and in addition to factual information, provides helpful hints for lung and heart/lung transplant patients and their families. The author is a double lung transplant recipient who provides authoritative research on the subject as well as providing her personal experiences with the transplant process. Published by Second Wind Lung Transplant Association, Inc., $22.50 (minus 20% for members of Second Wind). Click here for a detailed description including the Table of Contents.  In Stock/Readily Available.
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Beyond Chaos : One Man’s Journey Alongside His Chronically Ill Wife (by Gregg Piburn), Paperback – 320 pages (May 1999) Arthritis Foundation; ISBN: 091242320X. This daring and thought-provoking chronicle encourages readers, both the healthy and the unhealthy, to become open, honest, and courageous in dealing with the sensitive issues surrounding a life invaded by chronic illness. Donna Scribani, a Cystic-L subscriber, says “I am reading a book right now that is the absolute best book I have come across with regards to living with chronic illness (I am a caregiver, not a patient). The book is useful reading for both patient and caregiver, etc. I actually heard about the book on Cystic-L I believe. The title is: Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife, written by Gregg Piburn. Although it doesn’t follow a CF person’s illness, there isn’t much that doesn’t run parallel to the emotions, physical setbacks, etc. that I have experienced with managing my child’s CF. Excellant book. I just bought my own copy despite having borrowed one from our local library.”  In Stock/Readily Available.
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The Nicholas Effect: A Boy’s Gift to the World (by Reg Green), Hardcover – 246 pages (May 18, 1999) O’Reilly & Associates; ISBN: 1565925971. The Nicholas Effect is the touching and transcendent book by Reg Green, father of Nicholas Green, the little boy from Bodega Bay, CA, who was shot in Italy and whose organs were donated to seven Italians. This led to an outpouring of love by the people of Italy and a sharp increase in organ donor rates. Here is a book that will make you cry, make you glad you’re a human, and make you want to do something great.   In Stock/Readily Available.
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Your Child in the Hospital: A Practical Guide for Parents (by Nancy Keene, Rachel Prentice, Linda Lamb (Editor)), Paperback – 160 pages 2nd edition (April 15, 1999) O’Reilly & Associates; ISBN: 1565925734. Pocket-sized, practical guide for parents. Discusses preparing a child for staying in the hospital, packing for the hospital, preparing for surgery, pain management, feelings and behavior, keeping family life going, hospital records, payments, and financial assistance. Previous edition: c1997. Trim size: 8 x 5 inches. Softcover.   In Stock/Readily Available.
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Good If Not Great Living With Lung Disease (Last of six) (by Phil Petersen, B., Sheree Watson (Editor), Paperback (March 30, 1999) Raven Publishers Inc.   In Stock/Readily Available.
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The Omega Diet: The Lifesaving Nutritional Program Based on the Diet of the Island of Crete (by Artemis P. Simopoulos, Jo Robinson) Paperback – 382 pages 1 Harper edition (March 1999) HarperCollins (paper); ISBN: 0060930233. Is it really possible that eating more fat is the key to better health? It depends on the fat, according to Dr. Artemis Simopoulos. The Omega Plan shows, in great detail, the difference between omega-3 fats, those found in fish and some green vegetables, and omega-6 fats, which are found in most meats and vegetable oils. The former have heart-protective and cancer-preventive properties; the latter, he writes, cause obesity, heart disease, cancer, depression, and a host of other ills. Omega-3 fats are at the heart of his plan, along with ample servings of fruits and vegetables. Unlike diets based on deprivation, Simopoulos offers some fairly lush food choices, including an ounce of cheese every day. Best of all, The Omega Plan is bursting with so much useful information about food shopping and preparation that you’ll be able to use its advice the second you put the book down.   In Stock/Readily Available.
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The Ethics of Organ Transplants : The Current Debate (by Arthur L. Caplan (Editor), Daniel H. Coelho (Editor)), Paperback – 320 pages (March 1999) Prometheus Books; ISBN: 1573922242 In 34 mostly recent articles, bioethicists, medical, legal, and cultural analysts confront the difficult issues engulfing organ sources, policies, commodification, and values: defining death, the use of fetal tissue, living donors, xenografting, selling and allocating organs. The bibliography includes web sites.  In Stock/Readily Available.
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Cystic Fibrosis: A Family Affair (by Jane Chumbley) Paperback – 128 pages 1 edition (March 1999) SPCK and Triangle; ISBN: 0859697711; This book is divided into three sections; the first is a guide for parents, with a section answering the bewildering questions that are often asked. The second section covers life for young adults who have CF and the practical and emotional difficulties faced by their families. The third section covers the prospects of new treatments for CF and the progress of research into gene therapy. The book offers real hope in the face of life threatening illness.   In Stock/Readily Available.
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Good If Not Great Travel With Oxygen (by Phil Petersen)
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The Breathing Disorders Sourcebook (by Francis V. Adams, MD) Paperback – 240 pages (November 1998) Lowell House; ISBN: 073730006X; This book describes normal breathing and specific lung diseases (including sleep apnea, asthma, COPD, lung cancer, sarcoidosis, cystic fibrosis, fibrosis, kyphoscoliosis) with the goal of increasing patient understanding. The most disturbing symptom of lung disease, air hunger or shortness of breath is discussed as well as the proper medical evaluation that is called for. Suggestions for the proper diet, lifestyle changes, and specific breathing exercises are given for individuals with lung disease.   In Stock/Readily Available.
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Naked Before God : The Return of a Broken Disciple (by Bill Williams, Martha Williams), Hardcover – 352 pages (July 1998) Morehouse Publishing Company; ISBN: 0819217395; The question “why?” has haunted Bill Williams ever since his two siblings died of cystic fibrosis. As he himself grapples with the disease, he records his struggle to answer that question. Written from the perspective of Nathaniel, an imaginary disciple of Jesus, this cystic fibrosis patient wanders through the Gospel narratives revisiting a theology of suffering from his own unique perspective. Arguing with Jesus and the other disciples, Nathaniel seeks healing for his soul even as his body falls apart. In painfully honest language, he demands to understand grace, suffering, and forgiveness and seeks to know the reality of God’s love for him. This is no theoretical theology, but a new lived theology that arises from experience and struggle, rather than from a textbook. Fearless in his search for answers, Williams takes on questions of life and death and faith, while maintaining am extraordinary sense of humor. His poetic prose, the sharpness of his wit, and the profound nature of his struggle will capture any reader who has struggled with questions of evil, pain and suffering. Bill Williams had been a semi-professional musician, an electronics technician, and a computer and video game designer. He gave all that up to pursue a Master of Arts Degree from The Lutheran School of Theology at Chicago, where he received an Outstanding Biblical Studies Award in 1994. LSTC also honored Williams with the Confessor of Christ Award. He is also the author of Manna in the Wilderness: A Harvest of Hope. Bill Williams died of cystic fibrosis in May 1998.   In Stock/Readily Available.
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Understanding Cystic Fibrosis (Understanding Health and Sickness Series), (by Karen Hopkin) This layperson’s resource gathers the latest advances in medical treatment, new and better tests for early diagnosis, and the many new research discoveries made after scientists pinpointed the gene causing CF in 1989. Especially helpful in this volume are guides for how best to work with HMOs and a list of support groups, organizations, and resources for families. In clear terms, Karen Hopkin, a Ph.D. in biochemistry from Albert Einstein College of Medicine, reviews all currently available treatments, discusses the history and diagnosis of CF, and covers the effects of the disease on the body. She also explains who gets CF and why, and illuminates new research that may one day lead to a cure. June 1998   Paperback In Stock/Readily Available.
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Alex, the Life of a Child. (by Frank Deford) A personal account of the life of Alexandra Deford who died of CF. It was written by her sportswriter father. He has also volunteered much time and effort to the Cystic Fibrosis Foundation in the many years since Alex died. Paperback – 224 pages (September 1997) Rutledge Hill Press.   In Stock/Readily Available.
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Coping With Prednisone (And Other Cortisone-Related Medicines): It May Work Miracles, But How Do You Handle the Side Effects, Eugenia Zuckerman and Julie Ingelfinger, MD, St. Martin’s Press, New York, Hardcover, 176 pages; ISBN: 0312155026
A member of Cystic-L said “Written from both a physician and layman’s perspective, it is really interesting reading, if a little scary when reading about all the side effects!” Other opinions/reviews are given at the link below. August, 1997  In Stock/Readily Available.
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Till Death Do Us Part, Lurlene McDaniel, Bantam Books; ISBN: 0553570854, paperback, July 1997; The doctor’s diagnosis for April Lancaster is not good. April has a brain tumor which cannot be operated on. She’s only 18, and her future is uncertain. But when she meets Mark Gianni, a 21-year-old with a passion for car racing, things change. Mark is handsome and charming–and has cystic fibrosis. Despite herself, April falls completely in love with him. April says yes when Mark asks her to marry him. But a racing accident aggravates Mark’s CF, and April must make a decision that will change the course of her life forever.   Paperback In Stock/Readily Available.
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Close to the Bone : Life-Threatening Illness and the Search for Meaning by Jean Shinoda Bolen. A Cystic-L subscriber says: I’m in the middle of the book right now and for the first time in over a decade of being primary caregiver to a cf child, I feel empowered. I think when my child is an adult and I request him to read or listen to this audio tape, I will be passing along a gift to him. Another Description: Jungian analyst Bolen offers a thought-provoking and optimistic book about the roles patient, friend, and physician may play during life-threatening illnesses. Bolen argues that standard psychotherapy for such patients can be harmful because it concentrates on what is wrong with the patient; depth psychology, on the other hand, focuses on what is right with the patient. Indeed, Bolen maintains that life-threatening illness can provide opportunities, such as a chance to ask “who you are when you stop doing” and “do you matter?”. Bolen concludes that the importance of the soul has been neglected. Patients, family members, and caregivers should concentrate on freeing the soul and supporting the individual in whom it resides.   In Stock/Readily Available.
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Cystic Fibrosis : A Guide for Patient and Family, 2nd Edition (by David M. Orenstein) A good, general, easy to read guide for the “lay person” which can be ordered from any bookstore. Good reference for those new to Cystic Fibrosis. Paperback, Published by Lippincott-Raven Publishers, January 15, 1997   In Stock/Readily Available.
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Sibling Loss (by Joanna H. Fanos) A study of the long term psychological impact of loosing a sibling to cystic fibrosis. Many intriguing anecdotes and quotes and excellent analysis from a freudian point of view dealing with the associated guilt feelings and life choices made by those affected by this experience. 182 pages, (December 1996), Lawrence Erlbaum Assoc; ISBN: 0805817778   In Stock/Readily Available.
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In the Shadow of Illness; Parents and Siblings of the Chronically Ill Child (by Bluebond-Langner, M.), Princeton University Press, December, 1996, ISBN:0-691-02783-8
Myra Bluebond-Langner is Professor of Anthropology at Rutgers University, Camden. She received the Margaret Mead Award for The Private Worlds of Dying Children and has lectured for twenty-five years in the U.S. and abroad about chronically and terminally ill children and their families. “This book powerfully illuminates the everyday experience of families living with a chronically ill child.”–Patricia A. Marshall, Associate Director of Medical Humanities Program at Loyola University Chicago, Strich School of Medicine
What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease’s intrusion. The Private Worlds of Dying Children, Bluebond-Langner’s previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness–from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.
Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.  Paperback and Hardcover In Stock/Readily Available.
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Not to Worry, Mom, I’m Okay : Lessons in Living from a Beloved Son. (by Karma Smith Belnap) Paperback (June 1996)Covenant Communications; ISBN: 1555039316 Lisa Bergen, a Cystic-L subscriber says “It’s a mother’s story of her son with CF and their family. It is a really good book. A definate good read!!!”
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Cystic Fibrosis: The Facts. (by Ann Harris and Maurice Super) 3rd edition Part of the Oxford Medical Publication series. 128 pages; illustrations; 23 cm Oxford University Press; Oxford, New York, Tokyo; 1995. An interesting book, giving a British point of view on CF care and treatment. This edition contains a substantially updated approach to living with CF, and to the treatment of the disease.. It also includes new chapters on genetics and on new treatments.
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When Your Child Has A Chronic Illness; What you must know, what you can do, what you should expect (by Suzanne LeVert) Dell Publishing a division of Bantam Doubleday Dell Publishing Group, Inc. 1540 Broadway, New York, NY 10036. Copyright 1995. This book is not about CF but about dealing with a chronic illness. Really great, straight forward, down to earth kind of advice. This is a great book for new parents and for parents who maybe have not gotten or need a reminder course in getting it all together in dealing with a chronic illness (we all could use that from time to time). I got this at Book Stop bookstore for $3.99. If the book can not be found in your local bookstore it can be ordered directly from Dell books at Dell Readers Service, Box DR, 1540 Broadway, New York, NY 10036.

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Daybreak by Belva Plain; Mass Market Paperback, Reprint edition (April 1995) Dell Pub Co; ISBN: 0440216818
A member of CYSTIC-L says: This book is real big on plot- and has more twists than the average made for TV movie. Of course, CF is mixed into the plot along with a switched at birth scenario, racists and the KKK. Call it a good book for the beach, on a topic we care about. * Dana Jarrett, another member of CYSTIC-L, says: “Its treatment of cystic fibrosis is brief, more of a reference than anything else. Not recommended if you’re looking for education about the disease or its effects. A good beach read, with some suspense and plot twists.” * Another member of CYSTIC-L, says: “Daybreak was probably about the worst book dealing with CF I have read. It is light reading, had inaccuracies about CF and was basically pointless. There are other more accurate and interesting novels and of course some wonderful non-fictions books. I read this novel when it first was published so I could be foggy on details. I think it had to do more with a baby swap in the hospital, one families less than perfect (ie sick with CF) child being given to a family because a hospital worker knows the family. The family then raises a wonderful and healthy and perfect child and is devastated to learn their imperfect, “real” child has CF.”   Paperback and Audio Cassette In Stock/Readily Available.
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Surviving Transplantation-A personal guide for Organ Transplant Patients, their Families, Friends and Caregivers (by John Craven MD and Susan Farrow OT) It was published 1993. 196 pages. May be ordered from: University of Toronto Press, 3400 Nagel Drive, Buffalo, NY 14225 at a cost of $16.95 plus $3.00 P&H, $1.00 P&H for each additional book. Or read online free of charge.

A Time to Die….. (by Lurlene McDaniel, part of her One Last Wish series) 150 pages; Bantam Books;  Dimensions (in inches): 6.88 x 4.19 x .45, ISBN: 0553298097; 1992. One person says: “It’s about a 16 year old girl with CF. After reading the back insert, it says that this series is written for teenagers, but you may still enjoy it, I did. The book is practically a mirror image of what some of our lives may be like, the good, the bad, and the ugly (sorry Mr. Eastwood ) Some may not like the book because of it’s realism. That’s okay. But what I was thinking, I wonder if any of the people who put “red tape” in our way really KNOW what we go through. Maybe if they did, they would be more accepting. Send it to your congressman, send it to insurance companies, send it to your boss, whoever. The point is, this book might help them to realize the struggle most of us go through in our lives. I’d just hope that if people knew, maybe things would be different” A parent of a teenage girl with CF says: “I bought this book for (my child) thinking she might like it…she didn’t read it so I read it myself. It is rather corny, and not accurate as someone else mentioned. Not to mention depressing, so I guess it’s just as well she never read it…I think the title turned her off. Why this person writes these books intended for teenagers I really don’t know. Just my opinion” The publisher, Bantam Doubleday Dell Publishing Group, Inc. says: Sixteen-year-old Kara Fischer has cystic fibrosis and only months to live. But the close-knit bond she develops with Vince, who also has the disease, helps her come to terms with her own illness. Given one last wish, Kara wonders if miracles could really happen.

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Sinus Survival – a Self-help Guide for Allergies, Bronchitis, Colds, and Sinusitis (by Dr. Robert S. Ivker) Does not focus on sinus problems of the PWCF but it does contain a lot of really good everyday kind of tips for keeping sinusitis down. G.P. Putnam’s Sons, 200 Madison Avenue, New York, NY 10016;  1992
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Organ Transplants : A Patient’s Guide (by Massachusetts General Hospital Organ Transplant Team, H. F. Pizer) Hardcover – 243 pages (November 1991) Harvard Univ Pr; ISBN: 067464235X    In Stock/Readily Available.
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A Parent’s Guide to Cystic Fibrosis (University of Minnesota Guides to Birth and Childhood Disorder) by Burton L. Shapiro, Ralph C. Heussner 124 pages,  Published by Univ of Minnesota Pr (Trd), February 1991, ISBN: 0816614881
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Gillian: A Second Chance. (by Veronica Stauton) A personal account of the life of Gillian Staunton 240 pages; illustrations; 21 cm Blackwater Press; Dublin; 1991.
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Turn It Into Glory. (by Meg Woodson) A Mother’s moving story of her daughter’s (PWCF) last great adventure. 222 pages; 22 cm,  ISBN: 1556611781, Bethany House Publishers; Minneapolis, MN; 1991. Dana Jarrett, a member of CYSTIC-L, says: “A heart-wrenching story of a mother losing her second child to cystic fibrosis. I would not recommend this to someone whose child is newly-diagnosed. More geared toward the grieving parent. Very emotional.” Another member of CYSTIC-L says: “It’s the mother’s account of the last six weeks of her 23 year old daughter’s life (spent in the hospital). This is the continuation of a couple of other books by the same woman about her daughter. I remember reading the first book, If I Die At Thirty when I was a teenager. Both of these books have very religious overtones. This is not a pull-yourself-up-by-the-bootstaps, everything is for the best book. There is nothing about the daughter’s life in it. It’s only about how she dies. After I finished reading it, I was just numb.”

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Life in My Hands. (By Doub Lab) A personal account of the life of the author who had CF. Paperback (August 1990) Labpro Press; ISBN: 0962921602 A member of Cystic-L says “I wanted to share the name of a good book I read by a guy with CF. It’s been a while since I read it but I think he wrote it in the last year or so before he died from CF (in his 30s?). The main point of the book is in the title and that’s why I recommend it” The author’s mom writes to Cystic-L “I think it’s great that you can all chat together about your meds, your docs, your experiences. As a mother of one wonderful guy who made a difference in the lives of everyone he knew, I want you to know about his (and my) book. He was born when the life expectancy of CF’s was two years and he lived to be nearly 40. Of course now CF’s sometimes live to be in their ’50’s, ’60’s and more. Life expectancy will surely improve, too, in time. If you would like to read his story, MY LIFE IN MY HANDS, Living on with Cystic Fibrosis, you can order it from Labpro Press, 43-155 Portola Ave., Palm Desert, CA 92260. The price is $6.20 including (book rate) postage.”

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Cystic Fibrosis; Index to Modern Information. (by Jonathon Greer) Paperback (September 1988) ABBE Publishers Association of Washington, DC; ISBN: 0881649236
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Give Me One Wish. (by Jackie Gordon) A personal account about the life of Christine Gordon 350 pages; illustrations; 25 cm; Norton; New York; 1988. A member of CYSTIC-L says: “Non fiction but reads well, seems it is accurate. If you read the book you might recall the dad was a Sesame Street person; this intrigued me probably because my pwcf was watching Sesame Street at the same time his little girl was being treated. This child in the book was misdiagnosed and the family had some terrible experiences with unkind medical people and also had some wonderful experiences also. The marriage broke up, I think there was a great edeal of strain with the child and serious money problems. The pwcf tried to go to college – Suffolk in Boston I think, but she was not well enough and she died young. There was alot in this book to relate to, it was very bitter sweet.”

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Living With Chronic Illness; Days of Patience and Passion (by Cheri Register) 302 pages; The Free Press; A Division of Macmillian, Inc., New York, 1987.
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We Are Not Alone; Learning to Live With Chronic Illness (by Sefra Kobrin Pitzele) 283 pages; Workman Publishing, New York, 1986.
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Robyn’s Book; A True Diary (by Robyn Miller) A personal account of the life of Robyn Miller. 179 pages; ISBN 0-590-3787-4
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Children’s Hospital (by Peggy Anderson) 532 pages; Harper & Row, New York, 1985. The real stories of six children (including a 15 year old boy with CF) reported in a novelistic style. A member of CYSTIC-L says: “It has a teenager with end stage CF as one of the main storylines. It is a really great book, I found it quite true to life. If you read it though, have a couple of boxes of Kleenex available! Even on re-reads I still end up crying my way through a lot of it. PARENTS – before you decide to read it, please be prepared! It deals quite graphically with end stage stuff. It may be more than you wish to deal with at this time.”

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Readings in Cystic Fibrosis by Special Learning Corporation Staff; Paperback (November 1984) Longman Group United Kingdom; ISBN: 089568411X
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Private Worlds of Dying Children by Myra Bluebond-Langner, Paperback (April 1980) Princeton Univ Press; ISBN: 0691028206   In Stock/Readily Available.
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Psychosocial Aspects of Cystic Fibrosis : A Model for Chronic Lung Disease by Paul Patterson; Hardcover (June 1973) Center for Thanatology Research & Education; ISBN: 0930194330
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Cystic Fibrosis by Michael E. Fritz, Hardcover (June 1973) Irvington Pub; ISBN: 0842271333
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Anna Joins In by Katrin Arnold, Renate Seelig (Illustrator) ASIN: 0687015308
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CF in His Corner by Gail Radley
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Faith, Hope, and Luck : A Sociological Study of Children Growing Up With a Life-Threatening Illness by Charles Waddell
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Families in stress : a study of the long-term medical treatment of children and parental stress by Sheila P. Harrisson, ASIN: 0443018855
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The Family Life of Sick Children : A Study of Families Coping With Chronic Childhood Disease by Lindy Burton
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Following Joey Home by Meg Woodson , ASIN: 0310348609
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Good-Bye, Best Friend by Cherie Bennett ASIN: 0061067393
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Helen’s victory: the story of a chest illness by June Mead ASIN: 0900279001
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I’ll Get to Heaven Before You Do! by Meg Woodson ASIN: 0687186110
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If I Die at Thirty by Meg Woodson ASIN: 0310348501
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Time of Her Life by M. Woodson ASIN: 0310348706
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Technical

Cystic Fibrosis : Medical Care (by David M. Orenstein, Robert C. Stern, Beryl J. Rosenstein). Lippincott Williams & Wilkins Publishers. May 2000, paperback.  Cystic-L subscriber Barbara Palys says “Definitely not a rehash as it was written for medical professionals and not lay people. It is an excellent book, one of the best ones I have read. It is specifically geared to in-hospital care and frequently encountered situations. Section writers are the top in their field of expertise. The average lay person may have to read it carefully with a medical dictionary by their side. I highly recommend the book.”  In Stock/Readily Available.
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Cystic Fibrosis in Adults (by James R., Md. Yankaskas (Editor), Michael R., Md. Knowles (Editor), Hardcover (June 1999) Lippincott Williams & Wilkins Publishers; Comprehensive text for the diagnosis and care of adults with cystic fibrosis. Text is organized by the organ systems most affected by CF: molecular and cellular bases of disease pathogenesis, pulmonary disease, gastrointestinal system, and other organ systems. Extensively referenced.
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Study of the Cystic Fibrosis Transmembrane Conductance Regulator (Cftr) Protein in Human and Mouse Vas Deferens (Acta Biomedica Lovaniensia, 189) (by Ingrid Reynaert), Paperback – 140 pages (December 1998) Leuven Univ Pr; ISBN: 9061869404
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Maturational and Electrophysiological Properties of CFTR Proteins Carrying In Vitro Mutagenized R Domains (Acta Biomedica Lovaniensia) (by Anne Vankeerberghen), Paperback – 116 pages (November 1998) Leuven University Press;
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Clinical Practice in Respiratory Care by James B. Fink (Editor), Gerald E. Hunt (Editor) Hardcover (October 1998) Lippincott-Raven Publishers; ISBN: 0397550936   In Stock/Readily Available.
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CFTR and the Molecular Basis of Cystic Fibrosis (Medical Intelligence Unit Series) by Jeffrey Wine, Hardcover, (July 1998) Chapman & Hall; ISBN: 0412134810
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Treatment of the Hospitalized Cystic Fibrosis Patient by David M. Orenstein (Editor), Robert C. Stern (Editor), Hardcover, January 15, 1998, ISBN: 0824795008  Overview of latest developments in the care and effective management approaches for hospitalized cystic fibrosis patients. 18 contributors, 17 U.S.
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A Practical Approach to Pulmonary Medicine by Ronald H. Goldstein (Editor), James J. O’Connell (Editor), Joel B. Karlinsky; Paperback – 605 pages (September 1997) Lippincott-Raven Publishers; ISBN: 0781712378   In Stock/Readily Available.
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Molecular Analysis of CFTR Mutations in Cystic Fibrosis Patients With Atypical CF and in Patients With Congenital Bilateral Absence of the Vas Deferens by Hui Teng; Paperback (July 1997); Coronet Books; ISBN: 906186805X   In Stock/Readily Available.
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Interpretation of Pulmonary Function Tests : A Practical Guide by Robert E. Hyatt, Paul D. Scanlon, Masao Nakamura Paperback (April 1997) Lippincott-Raven Publishers; ISBN: 0316262617 This volume is a practical guide to the optimal clinical use of pulmonary function tests. The focus of the book is on the clinical utility of the most common tests–what the test measures, what the results mean, what kinds of abnormalities the test can detect, and what kinds of clinical questions the test can answer.Coverage includes tests for measuring airway obstruction, response to bronchodilators, diffusing capacity of the lungs, gas exchange, lung resistance and compliance, distribution of ventilation, and maximal respiratory pressures. Also included are chapters on preoperative pulmonary function testing and tests of exercise capacity. The authors discuss test patterns in various diseases, offer guidelines on when to test and what to order, and explain how to interpret test results. The concluding chapter presents illustrative cases.

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Cystic Fibrosis Pulmonary Infections : Lessons from Around the World (Respiratory Pharmacology and Pharmacotherapy) by A. Bauernfeind (Editor), Melvin I. Marks (Editor), B. Strandvik (Editor) Hardcover, Publication date: June 1996, ISBN: 081765027X
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Cystic Fibrosis : Directory of Authors of New, Medical and Scientific Reviews With Subject Index Paperback, Published by Abbe Pub Assn of Washington Dc, Publication date: May 1996, ISBN: 0788310437
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Cystic Fibrosis by Dennis J. Shale (Editor) Hardcover (April 1996) Login Brothers Book Company; ISBN: 072790826X   In Stock/Readily Available.
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Cystic Fibrosis — Current Topics (J.A. Dodge, D.J.H. Brock, and J. W. Widdicombe, editors) Volume 1, Hardcover 1993,  ISBN: 0471931012; Volume 2, Hardcover 1994,  ISBN: 0471951668; Paperback 1996,  ISBN: 0471963534 illustrations; 24 cm; J Wiley and Sons; New York.
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Genetic Studies of the Cystic Fibrosis Transmembrane Conductance Regulator Gene in Belgian CF Patients (Acta Biomedica Lovaniensia , No 110) by Harry Cuppens; Paperback (November 1995) Coronet Books; ISBN: 9061866820
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Cystic Fibrosis by Margaret E. Hudson, Duncan M. Geddes (Editor); Hardcover (October 1994) Lippincott Williams & Wilkins Publishers; ISBN: 0412484404
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Inhalation Therapy : Roche and Genentech Symposium, European Cystic Fibrosis Conference, Paris, June 1994 (Respiration, Vol 62, Suppl 1) by Ch. Koch, E. Puchelle (Editor), Paperback (April 1995) S. Karger Publishing; ISBN: 3805561644
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Family Nursing : The Case of Cystic Fibrosis by Dorothy A. Whyte, Hardcover (May 1994) Avebury; ISBN: 1856285243
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Manual of Clinical Problems in Pulmonary Medicine (Spiral Manual Series) by Richard A. Bordow (Editor), Kenneth M. Moser (Editor), Paperback (October 1995), Little Brown & Co; ISBN: 0316102709   In Stock/Readily Available.
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Research on childhood diseases by entrepreneurs : hearing before the Committee on Small Business, United States Senate, One Hundred Third Congress, second session … Thursday, May 26, 1994 ASIN: 0160467209
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Cystic Fibrosis (Venture Books : Health and the Human Body) by Alvin Silverstein, Virginia Silverstein, Robert Silverstein List:  Published by Franklin Watts, April, 1994, ISBN: 0531125521
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Cystic Fibrosis, Basic and Clinical Research :Proceedings of the 17th Annual Meeting of the European Working Group for Cystic Fibrosis, Copenhagen by Niels Hoiby, Svend Stenvang Pedersen (Editor) Hardcover,  Published by Excerpta Medica, Publication date: April 1993, ISBN: 0444813780
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Cystic Fibrosis (Lung Biology in Health and Disease, Vol 64) by Pamela B. Davis (Editor) Hardcover,  Published by Marcel Dekker, Publication date: February 1993, ISBN: 082478815X
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Clinical Ecology of Cystic Fibrosis : Proceedings of the 18th European Cystic Fibrosis Conference, Madrid, 21-26 May 1993 (International Congress, No) by H. Escobar, F. Baquero, L. Suarez (Editor) Hardcover,  Published by Excerpta Medica, October 1993, ISBN: 0444816704
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The Identification of the Cystic Fibrosis Gene : Recent Progress and New Research Strategies by Lap-Chee Tsui, Giovanni Romeo, Rainer Greger, Sergio Gorini (Editor) Hardcover,  Published by Plenum Pub Corp, Publication date: July 1991, ISBN: 0306439093
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Cystic Fibrosis : Infection, Immunopathology, and Host Response (Allergy and Immunology : Clinical and Experimental Progress) by Richard B. Moss (Editor) Hardcover,  Published by Humana Press, Publication date: September 1990, ISBN: 0896031926
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Cystic Fibrosis (Peter Goodfellow, editor) Part of the Molecular Medicine Series 96 pages; illustrations; 24 cm Oxford University Press; New York, Oxford; 1989.
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Cystic Fibrosis : Nutritional and Intestinal Disorders by Ross W. Shepherd, Geoffrey J. Cleghorn, Hardcover,  Published by CRC Press, Publication date: October 1989, ISBN: 0849369541   In Stock/Readily Available.
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Cystic Fibrosis; Index to Modern Information by Jonathon Greer, Paperback (September 1988) ABBE Publishers Association of Washington, DC;ISBN: 0881649236
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Cellular and Molecular Basis of Cystic Fibrosis by G. Mastella (Editor); Hardcover (June 1988) San Francisco Press; ISBN: 0911302638
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Genetics and Epithelial Cell Dysfunction in Cystic Fibrosis : Proceedings (Progress in Clinical and Biological Research, Vol 254) by John R. Riordan (Editor) Hardcover (January 1988) Wiley-Liss; ISBN: 0471610429 Read A Review or Buy The Book Now!

Multipoint Mapping and Linkage Based upon Affected Pedigree Members : Genetic Analysis Workshop 6 : Proceedings of a Workshop Held at Gulf Park, Long Beach, Mississippi, October 10-12, 1988 by Robert C. Elston, M. Anne Spence
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Mucoviscidose (onze erfelijkheid); Authors: Lieve Denayer and Gerry Evers-Kiebooms; other contributors: Prof. Dr. Jean-Jacques Cassiman (well known geneticist), Prof. Dr. Jean-Pierre Fryns, Prof. Dr. Herman Van den Berghe

Published by: Uitgeverij Acco (Academische Co=F6peratief c.v.), Tiensestraat 134-136, B-3000 Leuven, Belgium, Koningin Wilhelminalaan 17, Postbus 395, 3800 AJ Amersfoort, the Netherlands; 1988. ISBN: 90 334 1855 X

A good book (in Dutch) to read on the hereditary aspects of CF. (I suspect this is the first book on a series on the topic). Topics covered are:

  1. Ziektebeeld en behandeling (symptoms and treatment)
  2. Psychische ontwikkeling van het muco-kind (psychological development of the child with CF)
  3. Gevolgen voor het gezin (effects on the family)
  4. Gegevens over erfelijkheid (data on heredity)
  5. Mucoviscidose: een autosomaal recessieve aandoening (CF: an autosomal recessive disease)
  6. Nieuwe mogelijkheden om te bepalen wie drager is van het muco-gen (new possibilities to determine who is carrier of the CF-gene)
  7. Prenatale diagnose van mucoviscidose (prenatal diagnosis of CF) – prenatale diagnose door vruchtwateronderzoek (prenatal diagnosis through amniocentesis) – prenatale diagnose door DNA-onderzoek op chorionweefsel (prenatal diagnosis through DNA-analysis on chorionic villi tissue)

Animal Models for Cystic Fibrosis : The Reserpine-Treated Rat by J. R. Martinez (Editor); Hardcover (June 1985) San Francisco Press; ISBN: 0911302549
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Immunological Aspects of Cystic Fibrosis (CRC Series in Immunology and Lymphoid Cell Biology) by Emmanuel Shapira, Gregory B. Wilson (Editor) Hardcover (January 1985) CRC Press; ISBN: 084936373X
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Cystic Fibrosis (Lynn M. Taussig, editor) This book contains what are probably the best descriptions of the medical complications of Cystic Fibrosis. It was written before the current revolution in understanding of Cystic Fibrosis genetics, so there is very little discussion of the underlying causes of the disease. It is a bit grim, but contains valuable information. 498 pages; illustrations; 21 cm,  ISBN: 0865771146 Thieme-Stratton; New York; 1984.
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Cystic Fibrosis : Horizons : Proceedings of the Ninth International Cystic Fibrosis Congress, Brighton, England. June 9Th-15th 1984 (by David Lawson, Editor)
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Cystic Fibrosis (Margaret E. Hodson, A.P. Norman, J.C. Batten, editors) 282 pages; illustrations; 24 cm Bailliere Tindall; London; 1983.
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Fluid and Electrolyte Abnormalities in Exocrine Glands in Cystic Fibrosis by P. M. Quinton (Editor) Hardcover (June 1982) San Francisco Pr; ISBN: 091130245X
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Current Problems and New Trends in Cystic Fibrosis by M. Schoeni (Editor); Hardcover Vol 014 (December 1981) S. Karger Publishing; ISBN: 3805534175
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Cystic Fibrosis ASIN: 019262024X
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Cystic fibrosis : manual of diagnosis and management by Charlotte M. Anderson, ASIN: 0632004789
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Cystic fibrosis and DNA tests : implications of carrier screening ASIN: 0160379865
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Cystic Fibrosis of the Pancreas by Anderson, ASIN: 0397603894
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Cystic fibrosis; [papers and discussion of the] Ciba Foundation Study Group No. 32 ASIN: 0700013733
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Cystische Fibrose : leben mit einer chronischen Krankheit by Gustel Matthias Schmitt, ASIN: 3801704882
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Fundamental problems of cystic fibrosis and related diseases; selected papers ASIN: 0883720191
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Genetic counseling and cystic fibrosis carrier screening : results of a survey ASIN: 0160380936
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Genetic tests and health insurance : results of a survey : background paper ASIN: 016038138X
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Mucus secretions and cystic fibrosis : Conference on Mucus Secretions and Cystic Fibrosis, Southern Ontario, October 24-27, 1976 ASIN: 3805526784
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Cystic fibrosis : projections into the future : an international conference held at the Israel National Academy of Sciences, Jerusalem, Israel, May 25-27, 1976 ASIN: 0883720426
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A Perspective of sodium and chloride ion-sensitive electrode sweat tests for screening in cystic fibrosis ASIN: 0903155095
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Problemy medycyny klinicznej i do‚swiadczalnej ASIN: 8301036249
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Psychosoziale Versorgung bei Mukoviszidose : Ergebnisse einer multizentrischen Studie by Gerald Ullrich ASIN: 3631457480
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Recent advances in cystic fibrosis research : 8th annual meeting of the European Working Group for Cystic Fibrosis, Bad Gastein, June 2-3, 1978 ASIN: 3805529848
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Textbook of Cystic Fibrosis by John D. Lloyd-Still ASIN: 0723670269
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