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Life With Cystic Fibrosis
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Download or read book Alex written by Frank Deford and published by Open Road Media. This book was released on 2015-02-24 with total page 115 pages. Available in PDF, EPUB and Kindle. Book excerpt: A father’s moving memoir of cystic fibrosis “captures a brave child’s legacy as well as the continuing fight against the genetic disease” (The New York Times). In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal. Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girl—going to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight. Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughter’s birth. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal. Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying “I love you” so her brother could listen to her whenever he wanted, and as heartrending as the young girl’s tragic, dawning realization of her own very tenuous mortality, and her parents’ difficulty in trying to explain why. Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
Download or read book Salt in My Soul written by Mallory Smith and published by Random House. This book was released on 2019-03-12 with total page 336 pages. Available in PDF, EPUB and Kindle. Book excerpt: The diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five—the inspiration for the original streaming documentary Salt in My Soul “An exquisitely nuanced chronicle of a terrified but hopeful young woman whose life was beginning and ending, all at once.”—Los Angeles Times Diagnosed with cystic fibrosis at the age of three, Mallory Smith grew up to be a determined, talented young woman who inspired others even as she privately raged against her illness. Despite the daily challenges of endless medical treatments and a deep understanding that she’d never lead a normal life, Mallory was determined to “Live Happy,” a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love. For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness. What emerges is a powerful and inspiring portrait of a brave young woman and blossoming writer who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived—and a call for all of us to embrace our own lives as fully as possible.
Book Synopsis The CF Warrior Project by : Andy C. Lipman
Download or read book The CF Warrior Project written by Andy C. Lipman and published by Booklogix. This book was released on 2019-05-15 with total page 216 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Andy's book will provide hope for those who so desperately need it. These stories of strength and determination are inspiration to keep fighting in our own lives." --Celine Dion "These are tales of warriors who have beaten the odds by making their dreams come true. These are stories that will give you hope. And by buying this book, you will bring us closer to a cure. That is my dream." --Lewis Black "After spending time with cystic fibrosis warriors throughout the country, I've quickly realized they are the toughest and most resilient people I have ever met. The outlook CF warriors have on life is one that everyone should strive to have." --Colton Underwood "These are the stories of CF warriors who refused to succumb to a distressful prognosis, and instead thrived through the power of belief." --Megan Fox
Book Synopsis Cystic Fibrosis Life Expectancy by : Artour Rakhimov
Download or read book Cystic Fibrosis Life Expectancy written by Artour Rakhimov and published by CreateSpace. This book was released on 2013-06-21 with total page 80 pages. Available in PDF, EPUB and Kindle. Book excerpt: Cystic fibrosis is a lifestyle disease. Very few people on the West are aware that there are many Russians with CF (cystic fibrosis) who are over 50 and even 60 years old due to their adherence to one medical therapy that was developed and practiced by over 150 Soviet and Russian medical doctors. Since 1960s, these MDs have applied the Buteyko breathing therapy to increase body oxygen levels, and these doctors claim that people with CF can have at least normal (or average) life expectancy if their maintain high (or normal) body O2 content. You will not find such information in any other cystic fibrosis books. Cystic fibrosis life expectancy has been steadily growing for many decades. In late 1930s, most babies with CF died before their first birthday. Later, in the 1950s, CF life expectancy was less than 10 years. Soon after, due to use of various therapies, it increased from 14 years (in the 1980s) up to current 35-37 years. Some researchers, in their cystic fibrosis books, predict that babies born with CF during this century can live up to their 50s. But a group of Russian doctors claim that main symptoms of CF can be defeated. My own experience, in successful elimination of major symptoms of CF in my students, also suggests the same conclusions. These breathing methods address lifestyle factors that influence body O2 and use breathing exercises to increase body oxygenation. The book offers a detailed description of main lifestyle modules that increase body O2 naturally and significantly reduce many symptoms of CF (e.g., coughing, too much mucus, wheezing, and various digestive concerns) within days. How and why can these therapies work? CF is considered a genetic disease. So is asthma, or Down syndrome. Not all genetic diseases are the same. Many of them, CF included, are also lifestyle diseases meaning that lifestyle choices have a direct impact on quality of life (and CF life expectancy). Western medical studies clearly proved that tissue hypoxia (low O2 in cells) creates problems in the work of tiny ionic pumps that transport chemicals (sodium, chlorine and water) across the epithelial layers. This negative effect of hypoxia is present even in healthy people, but more expressed in people with CF due to the presence of the defective CFTR gene. Each and every study that measured respiratory parameters in people with CF found too fast and deep breathing (hyperventilation) in comparison with the medical norm (that is tiny). There are two long-term scenarios due to overbreathing. Either we get low CO2 levels in the blood (this causes spasm of blood vessels and reduced body O2) or we destroy our airways and lungs due to injurious effects of hypocapnia. In any scenario (with and without lung involvement), hyperventilation leads to low O2 levels in cells. Low cellular O2 causes formation of too thick and viscous mucus. Cell hypoxia also suppresses the immune system. Both factors promote growth of pathogens in people with CF in the respiratory and digestive systems, while other organs and body parts are also under physiological and biochemical stress due to low O2 in cells. Other factors, such as chronic mouth breathing and chest breathing, also reduce body O2 and make any treatment of CF less effective. Therefore, the suggested medical therapy, in order to increase CF life span, is to slow down automatic breathing back to the medical norm and increase body O2 naturally. Clinical experience of Buteyko breathing MDs in Russia suggests that results of a simple body O2 test predict cystic fibrosis life expectancy. People with moderate degree of CF usually have only about 15-20 seconds or less for their body oxygen test, while the medical norm is 40 seconds. In terminally ill people (with CF and many other disorders) body O2 is less than 10 seconds. With over 40 seconds for the body O2 test, a person with CF can eliminate all symptoms and have an average life expectancy.
Book Synopsis A Life Course Perspective on Health Trajectories and Transitions by : Claudine Burton-Jeangros
Download or read book A Life Course Perspective on Health Trajectories and Transitions written by Claudine Burton-Jeangros and published by Springer. This book was released on 2015-08-11 with total page 215 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book examines health trajectories and health transitions at different stages of the life course, including childhood, adulthood and later life. It provides findings that assess the role of biological and social transitions on health status over time. The essays examine a wide range of health issues, including the consequences of military service on body mass index, childhood obesity and cardiovascular health, socio-economic inequalities in preventive health care use, depression and anxiety during the child rearing period, health trajectories and transitions in people with cystic fibrosis and oral health over the life course. The book addresses theoretical, empirical and methodological issues as well as examines different national contexts, which help to identify factors of vulnerability and potential resources that support resilience available for specific groups and/or populations. Health reflects the ability of individuals to adapt to their social environment. This book analyzes health as a dynamic experience. It examines how different aspects of individual health unfold over time as a result of aging but also in relation to changing socioeconomic conditions. It also offers readers potential insights into public policies that affect the health status of a population.
Book Synopsis Hodson and Geddes' Cystic Fibrosis by : Andrew Bush
Download or read book Hodson and Geddes' Cystic Fibrosis written by Andrew Bush and published by CRC Press. This book was released on 2015-07-24 with total page 675 pages. Available in PDF, EPUB and Kindle. Book excerpt: Hodson and Geddes' Cystic Fibrosis provides everything the respiratory clinician, pulmonologist or health professional treating patients needs in a single manageable volume. This international and authoritative work brings together current knowledge and has become established in previous editions as a leading reference in the field. This fourth edition includes a wealth of new information, figures, useful videos, and a companion eBook. The basic science that underlies the disease and its progression is outlined in detail and put into a clinical context. Diagnostic and clinical aspects are covered in depth, as well as promising advances such as gene therapies and other novel molecular based treatments. Patient monitoring and the importance of multidisciplinary care are also emphasized. This edition: Features accessible sections reflecting the multidisciplinary nature of the cystic fibrosis care team Contains a chapter written by patients and families about their experiences with the disease Includes expanded coverage of clinical areas, including chapters covering sleep, lung mechanics and the work of breathing, upper airway disease, insulin deficiency and diabetes, bone disease, and sexual and reproductive issues Discusses management both in the hospital and at home Includes a new section on monitoring and discusses the use of databases to improve patient care Covers monitoring in different age groups, exercise testing and the outcomes of clinical trials in these areas Includes chapters devoted to 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 science aspects of the subject and reflecting the multidisciplinary nature of the cystic fibrosis care team.
Book Synopsis Cystic Fibrosis by : David M. Orenstein
Download or read book Cystic Fibrosis written by David M. Orenstein and published by Lippincott Williams & Wilkins. This book was released on 2012-03-28 with total page 788 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.”
Download or read book Facts about Cystic Fibrosis written by and published by . This book was released on 1995 with total page 6 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Lung Epithelial Biology in the Pathogenesis of Pulmonary Disease by : Venkataramana K Sidhaye
Download or read book Lung Epithelial Biology in the Pathogenesis of Pulmonary Disease written by Venkataramana K Sidhaye and published by Academic Press. This book was released on 2017-03-09 with total page 277 pages. Available in PDF, EPUB and Kindle. Book excerpt: Lung Epithelial Biology in the Pathogenesis of Pulmonary Disease provides a one-stop resource capturing developments in lung epithelial biology related to basic physiology, pathophysiology, and links to human disease. The book provides access to knowledge of molecular and cellular aspects of lung homeostasis and repair, including the molecular basis of lung epithelial intercellular communication and lung epithelial channels and transporters. Also included is coverage of lung epithelial biology as it relates to fluid balance, basic ion/fluid molecular processes, and human disease. Useful to physician and clinical scientists, the contents of this book compile the important and most current findings about the role of epithelial cells in lung disease. Medical and graduate students, postdoctoral and clinical fellows, as well as clinicians interested in the mechanistic basis for lung disease will benefit from the books examination of principles of lung epithelium functions in physiological condition. - Provides a single source of information on lung epithelial junctions and transporters - Discusses of the role of the epithelium in lung homeostasis and disease - Includes capsule summaries of main conclusions as well as highlights of future directions in the field - Covers the mechanistic basis for lung disease for a range of audiences
Book Synopsis Emerging Therapeutic Approaches for Cystic Fibrosis by : Miquéias Lopes-Pacheco
Download or read book Emerging Therapeutic Approaches for Cystic Fibrosis written by Miquéias Lopes-Pacheco and published by Frontiers Media SA. This book was released on 2020-01-27 with total page 281 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Integrated Palliative Care of Respiratory Disease by : Stephen Bourke
Download or read book Integrated Palliative Care of Respiratory Disease written by Stephen Bourke and published by Springer Science & Business Media. This book was released on 2012-12-03 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book brings together the knowledge, skills and attitudes of specialists in both Respiratory Medicine and Palliative Medicine to focus on the palliative care of patients with respiratory diseases. It deals not only with end of life care but also with symptom control and supportive care to improve the quality of life of those living their lives with advanced progressive lung disease.
Download or read book Muddy Thursday written by Darla Garvey and published by . This book was released on 2021-10-13 with total page 338 pages. Available in PDF, EPUB and Kindle. Book excerpt: There is nothing remarkable about finding a penny on the sidewalk or bumping into an old friend on the street, but what if you stumble upon a lifeless child lying in the grass on a cold, dark night? What happens then? In Muddy Thursday, Darla Garvey tells us exactly what happens, because it happened to her. And that child? He was her son. Darla Garvey would have preferred to write a murder mystery, an action hero series, or even a folktale. Anything but a memoir that centers on the most traumatic event of her life - and that is the sudden, mysterious death of her twelve-year old son, Ray. But this is the story that chose her. Ray lived with cystic fibrosis (CF), a genetic life-threatening disease that primarily affects the lungs and digestive system. His daily care was complicated and time-consuming, but between respiratory treatments Ray lived as if he didn't have cystic fibrosis. He was equal parts charming, feisty, thoughtful, stubborn, and incredibly funny. In fact, nothing brought Ray more joy than making people laugh. So it seems especially cruel that a young boy who brought laughter to this world, and one who fought every day to slow the progression of his disease, would be blindsided by something else that shockingly took his life. Ray's younger sister, Martha was also diagnosed with cystic fibrosis. Not only did Martha lose her only sibling, she lost her best friend, her partner in crime, and the only other person she knew who had CF. After her brother's death, Martha was left to deal with complications from her illness without the one person who would have understood her fight and would have championed for her to hang in there. Muddy Thursday chronicles Martha's courageous journey with, and without, her brother. With her sense of humor, Garvey skillfully provides levity just when the reader needs it the most. And while Muddy Thursday is certainly a tragic, heartbreaking story, it is also a testament to one family's strength, courage and hope. Most of all, Muddy Thursday is a love story.
Download or read book Coughing It All Up written by Luke Peters and published by . This book was released on 2020-12 with total page 446 pages. Available in PDF, EPUB and Kindle. Book excerpt: Born in 1972, Luke Peters was diagnosed with the chronic and life-limiting condition cystic fibrosis. His parents were told it was likely that he would spend much of his childhood in hospital and would be lucky to reach his teenage years. Almost 50 years later, Luke is still alive, still fending off the impacts of this disease with one hand whilst grabbing life and all that it has to offer with the other. With a steadfast resolve to fulfil his ambitions and a determination not to let cystic fibrosis define him, Luke has filled his life with achievements that few would have predicted possible at his birth. With two academic degrees under his belt, successful careers both in aviation and as a lawyer, time spent living both in France and the United States as well as travels to over forty countries worldwide, a pilot's licence and two healthy children, Luke has always aimed to take as much out of life as possible before the ravages of cystic fibrosis take the life out of him. From amazing highs to the very depths of sadness and on more than one occasion when he has almost lost his life, Luke's book describes in vivid detail the twists and turns that he has endured during his life so far. Now facing the proposition of a double lung transplant, which could save his life but could also end it, Luke describes the events that have brought him to this point, how he has dealt with each of them and how he has continuously strived to live his life to be just the same as everyone else, whilst accepting that it is okay to be different. 'Coughing It All Up' is a testament to the power of a positive outlook, and will have you smiling, laughing and crying in equal measure. A share of the proceeds from the book will go to CF-related charities.
Book Synopsis Cystic Fibrosis by : Melanie Ann Apel
Download or read book Cystic Fibrosis written by Melanie Ann Apel and published by Scarecrow Press. This book was released on 2006 with total page 288 pages. Available in PDF, EPUB and Kindle. Book excerpt: Describes the challenges of living with cystic fibrosis, as well as a description of the illness, and an explanation of procedures for diagnosis and therapy.
Book Synopsis Understanding Cystic Fibrosis by : Karen Hopkin
Download or read book Understanding Cystic Fibrosis written by Karen Hopkin and published by Univ. Press of Mississippi. This book was released on 2010-02-11 with total page 144 pages. Available in PDF, EPUB and Kindle. Book excerpt: Cystic Fibrosis (CF) is the most common genetic disorder in the white population. 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 early diagnosis. Understanding Cystic Fibrosis charts the progress that has been made in identifying the mutations that cause CF and in understanding how these genetic errors cause a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections. This book features a review of current available treatments; research that can lead to therapies and perhaps a cure; advice and resources for families and patients; how to work best with health-care providers and HMOs; the history and diagnosis of CF; who gets CF and why; how CF affects the lungs, intestines, and other organs; and a list of organizations, support groups, and resources.
Download or read book Antibiotics and Chemotherapy written by and published by . This book was released on 1971 with total page 326 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Liam, Strong as a Tree by : Meghan Behse
Download or read book Liam, Strong as a Tree written by Meghan Behse and published by . This book was released on 2020-05-05 with total page 24 pages. Available in PDF, EPUB and Kindle. Book excerpt: Liam couldn't be happier. He's off to kindergarten, where he's going to make a million new friends and learn a billion new things! Mom is worried about Liam going to school, but Liam knows he'll be fine. He has his oxygen mask and his medication for lunch and snack time. Plus, he knows he's strong as a tree. You see, Liam has a great big tree in his backyard. Mom says trees need lots of oxygen from the air, just like his lungs. And they need food from the ground, just like his tummy. Sometimes, their tree gets sick, sicker than the other trees. That's when Mom and Liam give it special food and extra love, and it grows big and strong again. School is everything Liam hoped it would be. And when Liam needs his oxygen mask or medication, his friends know that Liam just needs a little extra help to be strong like the others. Until one winter's day, when Liam catches a cold. Inspired by a real boy and his first year of school while battling cystic fibrosis, read how Liam's young friends, with compassion and support, remind Liam of his own strength during the isolating time of illness.
