Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me


Book Description

Jay Gironimi (rhymes with astronomy) is a man who can't eat and can't breathe. Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me is not an inspirational story of triumph over adversity. But if you'd like to read a series of reflections on poop and mucus, it just might be the book for you.




Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me


Book Description

Do you like stories of triumph over adversity? You should watch RUDY--it's really good. But if you like stories of broken homes and broken toilets, I've got the book for you. It's called Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. It's about how Cystic Fibrosis has f#$%*d me. After all, there's nothing funnier than laughing at someone else's misfortune




Not a Wasted Breath


Book Description

'Sis, the worst thing CF [cystic fibrosis] can do is kill me. It can't stop me from living.' Todd Gibbs spoke those words once to his sister and he proved that statement true time and time again. Though cystic fibrosis did kill him five days after his thirty-first birthday, the living he did showed that he had won the battle, even if CF eventually won the war. Not a Wasted Breath is not just a story about living with a fatal disease or waiting for a transplant. That was only a part of Todd's life. He never allowed his illness to rule his life, even in the face of over eighty hospitalizations. This is truly a story about how others perceived Todd, how they were affected by his presence in their lives, and how Todd viewed himself and his existence. In a poignant compilation of thoughts, memories, articles, and journal entries, LaRecea Gibbs, Todd's mother, creates a touching tableau of a life well spent that will inspire anyone to overcome personal obstacles through faith, determination, courage, and most of all, humor. Join mother and author LaRecea Gibbs in an inspiring biography which shows that though Todd's life was short, he never wasted a single breath. This Book is an inspiration to all readers in appreciating the gift of life. The account is thorough, has depth of development, is authentic, and puts us inside the people involved. Not a Wasted Breath enables readers to travel along emotionally. As a result, we count our own blessings. John Hagaman, Professor of English, Western Kentucky University, Director of WKU Writing Project.




Cystic Fibrosis Reversed


Book Description

Do not expect your medical doctor to know or teach you about lifestyle factors and how to change automatic breathing (the way we breathe 24/7). Medical schools teach nothing (zero) information about breathing retraining and nearly nothing about lifestyle (how to eat, sleep, exercise, etc.). It is true that cystic fibrosis life expectancy has been steadily growing for many decades. In the late 1930s, most babies with cystic fibrosis died before their first birthday. Later, in the 1950s, cystic fibrosis 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 predict that babies born with cystic fibrosis during this century can live up to their 50s. However, very few Westerners are aware that there are many Russian people with 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 doctors. Since the 1960s, these MDs have applied the Buteyko breathing therapy to increase body oxygen levels, and these doctors claim that people with cystic fibrosis can have at least normal (or average) life expectancy. My own experience, in successful elimination of major symptoms of cystic fibrosis in our students, also suggests the same conclusions. The book offers a detailed description of main lifestyle modules from our course. This increases body oxygen naturally and significantly reduce many symptoms of cystic fibrosis (e.g., coughing, too much mucus, wheezing, and various digestive concerns) within days. How and why can these therapies work? Western medical studies clearly proved that tissue hypoxia (low oxygen 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 cystic fibrosis due to the presence of the defective CFTR gene. Each and every study that measured respiratory parameters in people with cystic fibrosis found too fast and deep breathing (hyperventilation) in comparison with the medical norm (that is tiny). Low cellular oxygen causes the formation of too thick and viscous mucus. Cell hypoxia also suppresses the immune system. Both factors promote the growth of pathogens in people with cystic fibrosis in the respiratory and digestive systems, while other organs and body parts are also under physiological and biochemical stress due to low oxygen in cells. Other factors, such as chronic mouth breathing and chest breathing, also reduce body oxygen and make any treatment for cystic fibrosis less effective. Therefore, the suggested medical therapy, in order to increase cystic fibrosis life expectancy, is to slow down automatic breathing back to the medical norm and increase body oxygen naturally. Clinical experience of Buteyko breathing MDs in Russia suggests that results of a simple body oxygen test predict cystic fibrosis life expectancy. People with the moderate degree of cystic fibrosis 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 cystic fibrosis and many other disorders) body oxygen is less than 10 seconds. With over 40 seconds for the body-oxygen test, a person with cystic fibrosis can eliminate all symptoms and have an average life expectancy.




Unbreathable Breathe


Book Description

Description Introduces readers to the symptoms, causes, day-to-day activities of people with cystic fibrosis (CF), how the disease affects the body, and what it's like to live with the condition. Things that provide joy and affection to CFers What to do as a CFer to keep healthy. It's critical to gain as much knowledge as you can about cystic fibrosis and how to handle it if you have it. Serious infections may be avoided by making an effort to maintain your health as much as possible and by seeking treatment when necessary. The disease cystic fibrosis is incurable. Even while it may not be feasible to completely eliminate flare-ups, there are steps you can do to lessen their frequency and intensity as well as enhance your quality of life.




It's Just Our New Normal


Book Description

When you were five days old, you had a routine heel prick test and we thought nothing of it. A couple of busy weeks later, I received an unexpected phone call. We were to attend the hospital for further investigations into the heel prick test result. That phone call brought with it some devastating news. You - our precious baby, our baby that we had waited so long for - had cystic fibrosis. Cystic Fibrosis. Daddy and I didn't even know that we were carriers of the faulty gene, in fact we knew very little about the condition at all. Our beautiful, perfect little son! What had we done to you?Reeling from the shock and grief, we struggled at first to accept this new reality. Nothing made sense anymore, everything had changed. With so much to take on board, so much to learn and understand in a short space of time, we felt completely overwhelmed. Until we realised that not everything had changed. In fact, nothing much had changed at all. You were still our wonderful, amazing, funny, charming, loving, smiling, happy, uplifting little boy. Now we just had to learn how to deal with this diagnosis and protect your health as you grew up. This is the story of our journey together as a family so far. Our journey through the grieving process and out the other side to acceptance and the embracing of life itself. Along the way we have learnt so much about cystic fibrosis; we have learnt how it affects those with the condition, their life's challenges and their potential life expectancy. But we have chosen to focus our energies on the positives, and on hope. Hope in the scientists and researchers who are working hard on more targeted treatments for CF. Hope for a cure. Hope for your future.But, above all of that, we focus on you. You are the centre of our universe and in everything we do, we think of you first. Through you, our eyes are now open to the fact that all living things will die. We are mortal. We will die. Every last one of us. And no-one knows when. Of course we already knew that, but now we embrace it and we feel liberated. We are aware. We are no longer sleepwalking through our own lives. It is a good thing; a positive thing. And this is a positive story. Even bad news has a silver lining, and you are our silver lining. We will have a wonderful journey together, whatever it may bring. Life is a game, let's enjoy it!We could never have been prepared for this diagnosis to happen to us, but know this: we love you with all our hearts and we would not change you for the world. Of course, if we could take CF away from you, we would. But we can't. Let's hope and pray that the scientists can. And in the meantime, we will live life to the fullest and take nothing for granted, because life is precious and we have been gifted that fresh awareness through you. You are only two years old, yet you have already taught us so much. You are teaching us fresh approaches to, and perspectives on, life. Take chances! Experience everything! Don't be so serious - laugh and laugh hard. It's Just Our New Normal is the story of how we are blossoming as a family; taking the best care of you that we can and then putting cystic fibrosis to the back of our minds so that we can enjoy our day together. I hope that anyone facing a similar diagnosis may find some comfort in my words. We don't know what the future holds, but we have today. And today is good. All proceeds from the sale of this book will be donated to the Cystic Fibrosis Trust and The Butterfly Trust.




Understanding Cystic Fibrosis


Book Description

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.




Cystic Fibrosis Gene


Book Description

Cystic fibrosis (CF) is a genetic disorder that affects the lungs, pancreas, and other organs. It is a life-threatening condition that primarily affects the respiratory and digestive systems, leading to progressive lung damage, difficulty breathing, and malnutrition. CF is a relatively rare disease, with approximately 30,000 people living with the condition in the United States and about 70,000 people worldwide. The first recorded case of cystic fibrosis was in 1938, when Dr. Dorothy Anderson identified it as a distinct medical condition. However, it was not until the 1950s that researchers began to understand the cause of CF - a faulty gene known as the cystic fibrosis transmembrane conductance regulator (CFTR). This gene is responsible for creating a protein that regulates the movement of salt and water in and out of cells. In a person with CF, this protein does not function properly, causing a build-up of thick, sticky mucus in the lungs and other organs. The mucus traps bacteria and other foreign particles, leading to frequent respiratory infections and difficulty breathing. In the pancreas, the mucus obstructs the normal function of the organ, preventing the release of enzymes needed for proper digestion and absorption of nutrients. This results in malnutrition and growth issues in individuals with CF. CF is an autosomal recessive disorder, meaning that both parents must carry a mutated copy of the CFTR gene for a child to inherit the condition. If both parents are carriers, there is a 25% chance of having a child with CF.




Cystic Fibrosis


Book Description

Discusses what cystic fibrosis is, how it affects the body, how it is diagnosed and managed and includes information on finding support and living with this condition.




Nutrition in Cystic Fibrosis


Book Description

Nutritional therapies have been key early interventions, and remain central to the well-being and survival of patients with cystic fibrosis. The nature of the disease causes significant alterations in a patient’s ability to process and assimilate nutrients. Furthermore, many factors contribute to higher metabolic demands throughout a patient’s life. In combination, maldigestion, malabsorption, and increased metabolic demands pose a high hurdle for the patient to overcome in order to maintain optimal nutritional status. Nutrition in Cystic Fibrosis: A Guide for Clinicians is an excellent resource for physicians, nurses and dietitians who deliver care for patients with cystic fibrosis. The book provides an introduction to cystic fibrosis and nutritional assessments. It will also serve as a comprehensive guide to the nutritional monitoring and management of patients with cystic fibrosis including special populations within cystic fibrosis that require additional considerations. The chapters are written by experts in their fields and include the most up to date scientific and clinical information. Nutrition in Cystic Fibrosis: A Guide for Clinicians targets pediatric and adult pulmonologists and gastroenterologists, residents and fellows, internists, pediatricians, nurses, dietitians and general practitioners who treat patients with cystic fibrosis.