A Disclosures of Cystic Fibrosis-related Information to Romantic Partners
| Author | : Katie Broekema |
| Publisher | : |
| Total Pages | : 122 |
| Release | : 2016 |
| Genre | : Confidential communications |
| ISBN | : |
A Disclosures Of Cystic Fibrosis Related Information To Romantic Partners
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Cystic Fibrosis
| Author | : Marcus A. Mall |
| Publisher | : European Respiratory Society |
| Total Pages | : 342 |
| Release | : 2014-06-01 |
| Genre | : Medical |
| ISBN | : 1849840512 |
Cystic fibrosis (CF) is one of the most common fatal hereditary diseases. The discovery of the cystic fibrosis transmembrane conductance regulator (CFTR) gene 25 years ago set the stage for unraveling the pathogenesis of CF lung disease, continuous refinement of symptomatic treatments and the development of mutation-specific therapies, which are now becoming available for a subgroup of patients. This ERS Monograph provides an update on all aspects of CF lung disease, from infancy to adulthood, including current concepts on disease process, improvements in early diagnosis and monitoring, therapeutic approaches, and patient care. The book highlights important recent developments and discusses the next steps that will be required for further improvement of the life expectancy and quality of life of CF patients. It will be an essential reference for basic and clinical scientists and all members of the CF team.
Coughing It All Up
| Author | : Luke Peters |
| Publisher | : |
| Total Pages | : 446 |
| Release | : 2020-12 |
| Genre | : Biography & Autobiography |
| ISBN | : 9781838306823 |
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.
Muddy Thursday
| Author | : Darla Garvey |
| Publisher | : |
| Total Pages | : 338 |
| Release | : 2021-10-13 |
| Genre | : |
| ISBN | : 9780578869834 |
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.
Chronic Liver Failure
| Author | : Pere Ginès |
| Publisher | : Springer Science & Business Media |
| Total Pages | : 583 |
| Release | : 2010-11-03 |
| Genre | : Medical |
| ISBN | : 1607618664 |
Chronic liver failure is a frequent condition in clinical practice that encompasses all manifestations of patients with end-stage liver diseases. Chronic liver failure is a multiorgan syndrome that affects the liver, kidneys, brain, heart, lungs, adrenal glands, and vascular, coagulation, and immune systems. Chronic Liver Failure: Mechanisms and Management covers for the first time all aspects of chronic liver failure in a single book, from pathogenesis to current management. Each chapter is written by a worldwide known expert in their area and all provide the latest state-of-the-art knowledge. This volume is specifically designed to provide answers to clinical questions to all doctors dealing with patients with liver diseases, not only clinical gastroenterologists and hepatologists, but also to internists, nephrologists, intensive care physicians, and transplant surgeons.
Salt in My Soul
| Author | : Mallory Smith |
| Publisher | : Random House |
| Total Pages | : 336 |
| Release | : 2019-03-12 |
| Genre | : Biography & Autobiography |
| ISBN | : 1984855433 |
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.
The Art of Communication in Nursing and Health Care
| Author | : Theresa Raphael-Grimm, PhD, CNS |
| Publisher | : Springer Publishing Company |
| Total Pages | : 202 |
| Release | : 2014-10-10 |
| Genre | : Medical |
| ISBN | : 0826110568 |
A handy guide to tackling difficult patient and professional interactions with confidence and compassion In this age of increasing reliance on technology, it is essential that the fundamentals of compassion and good communication—the art of patient care—remain at the heart of health care. This clear, concise guide to professional communication strategies helps nurses and other health care clinicians to build effective patient relationships and navigate a wide variety of difficult patient and professional interactions. Written by a practicing psychotherapist who has devoted nearly 30 years of study to clinician—patient relationships, the book tackles such complex issues as dealing with demanding patients, maintaining professional boundaries, overcoming biases and stereotypes, managing clinician emotions, communicating bad news, challenging a colleague’s clinical opinion, and other common scenarios. The book guides the reader through a conceptual framework for building effective relationships that is based on the principles of mindfulness. These principles are embedded in discussions of the fundamental elements of interpersonal effectiveness, such as hope, empathy, and listening. Chapters apply mindfulness principles to specific challenging situations with concrete examples that describe effective clinical behaviors as well as situations depicting pitfalls that may impede compassionate care. From a focus on everyday manners in difficult situations to beneficial approaches with challenging populations, the guide helps health care professionals confidently resolve common problems. Brief, to-the-point chapters help clinicians channel their clinical knowledge and good intentions into caring behaviors that allow the patient to more fully experience empathy and compassion. With the guiding theme of “using words as precision instruments,” this is a resource that will be referred to again and again. Key Features: • Helps health care professionals and nurses communicate effectively in challenging clinical and professional situations • Uses the principles of mindfulness to build satisfying relationships and resolve problems • Addresses such difficult issues as demanding patients, maintaining boundaries, overcoming biases, managing clinician emotions, and much more • Provides special tips for communicating with family members and caregivers • Authored by a practicing psychotherapist specializing in clinician—patient relationships for nearly 30 years
Breath from Salt
| Author | : Bijal P. Trivedi |
| Publisher | : National Geographic Books |
| Total Pages | : 0 |
| Release | : 2020-09-08 |
| Genre | : Medical |
| ISBN | : 1948836378 |
Recommended by Bill Gates and included in GatesNotes "Elaborating on the science as well as the business behind the fight against cystic fibrosis, Trivedi captures the emotions of the families, doctors, and scientists involved in the clinical trials and their 'weeping with joy' as new drugs are approved, and shows how cystic fibrosis, once a 'death sentence,' became, for many, a manageable condition. This is a rewarding and challenging work." —Publishers Weekly Cystic fibrosis was once a mysterious disease that killed infants and children. Now it could be the key to healing millions with genetic diseases of every type—from Alzheimer's and Parkinson's to diabetes and sickle cell anemia. In 1974, Joey O'Donnell was born with strange symptoms. His insatiable appetite, incessant vomiting, and a relentless cough—which shook his tiny, fragile body and made it difficult to draw breath—confounded doctors and caused his parents agonizing, sleepless nights. After six sickly months, his salty skin provided the critical clue: he was one of thousands of Americans with cystic fibrosis, an inherited lung disorder that would most likely kill him before his first birthday. The gene and mutation responsible for CF were found in 1989—discoveries that promised to lead to a cure for kids like Joey. But treatments unexpectedly failed and CF was deemed incurable. It was only after the Cystic Fibrosis Foundation, a grassroots organization founded by parents, formed an unprecedented partnership with a fledgling biotech company that transformative leaps in drug development were harnessed to produce groundbreaking new treatments: pills that could fix the crippled protein at the root of this deadly disease. From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene's celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it. Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
Cystic Fibrosis
| Author | : Stephanie Duggins Davis |
| Publisher | : Springer Nature |
| Total Pages | : 525 |
| Release | : 2020-05-21 |
| Genre | : Medical |
| ISBN | : 3030423824 |
This book provides a comprehensive overview of the multisystem disease, cystic fibrosis, for both pediatric and adult patients. Written by experts in the field, the text outlines the progressive nature of CF as well as the impact of this autosomal recessive disease on the respiratory, gastrointestinal, endocrine, rheumatologic, and renal systems, as well as the patient’s mental health. The book begins with a chapter describing the history of cystic fibrosis and how the face of this life-shortening disease has changed over the past several decades. The following chapters elucidate the pathophysiology of how cystic fibrosis impacts each organ system. Current management and therapeutics are detailed with step-by-step guidelines for clinicians. This book is unique in that it highlights the entire person, not just the respiratory system, with detailed inclusion of the patient perspectives throughout, informing practice standards and considerations. This is an ideal guide for pediatric and adult physicians who care for patients with cystic fibrosis, as well as respiratory therapists, physical therapists, nurses, nutritionists, and pharmacists who care for these patients.
