COPD (chronic obstructive pulmonary disease) is most accurately described as being both chronic and progressive. Not only is it here to stay--it gets worse over time. A combination of chronic bronchitis, emphysema and some component of asthma, COPD is most frequently caused by long term exposure to tobacco smoke. In fact, it rarely occurs in people who have not had this exposure. No cure is yet available and we cannot repair destroyed lungs. On the basis of this information, many patients and their health care professionals alike may be tempted to give up, welcome inactivity and allow the disease to take its natural course. However, inactivity leads to deconditioning. Deconditioning causes you to become short of breath upon minimal exertion. Hence, your natural response to your disease actually intensifies the corrosive impact of your disease. Also, COPD sets the stage for multiple sub-diseases like infections and water retention. Even minor respiratory infections can pack a big wallop. However, these are preventable and treatable. You can avoid or at least slow that natural course. For good control of your disease, you have to participate in its management. You must take charge.
Destructive living habits are the usual root cause of your disease; likewise, constructive living habits will enable you to adapt and enjoy a rich quality of life in spite of your disease. This is a lesson learned from 30 years of pulmonary rehabilitation. If you are still smoking or someone close to you smokes, take immediate steps to remove that source of toxic exposure from your life. People fortunate enough to participate in a pulmonary rehabilitation program learn that yielding to inactivity is disabling.
Giving up control is tantamount to handing your life over to your disease. Conversely, becoming active and taking charge is enabling. Daily exercise recruits your body's support by building endurance, strength and confidence and reducing shortness of breath. By gathering your inner strength, life becomes more rewarding. Owing to self management, people who undergo pulmonary rehabilitation are hospitalized less often. Some are able to go back to work, while others enjoy more active leisure pursuits. Even if you do not have the opportunity to participate in a formal pulmonary rehabilitation program, you can still use the principles to enrich your life and control your COPD.
A practical description of the disease process will shed some light on how it is possible for you to manage your disease and your life on a daily basis. You can conceive of your disease as a three layer process. The basic layer relates to your loss of lung function. This is what your disease is doing to your lungs. It causes you to become short of breath when you exert. It is important to understand that your lung disease has been slowly advancing over many years--even before you could perceive that a disease process was present. This is because your lungs are divinely designed to meet your needs during heavy exertion. Accordingly, you can lose a great deal of lung function before you begin to feel it; eventually, your advancing disease will catch up with you by limiting your exertion to progressively lower levels. Detection of COPD in its earliest stages can lead to effective early intervention. Once the disease is detected, it is crucial to promptly take charge and halt its progression.
The next layer is the complication layer. This layer typically surfaces as the disease becomes more advanced. Because of oxygen deprivation and various causes, other organs in your body are affected. Beyond this point your lung disease alters your whole body. For example, your heart, circulation and muscles become less effective in performing their functions. Also, the side effects of medications come into play. Good self care helps to minimize the impact of the complication layer.
The most dynamic and menacing layer is the exacerbation layer. An exacerbation is an acute flare-up of your COPD. Your weakened lung defenses render you particularly vulnerable to lung infections. When most of us get a cold, it is a nuisance or inconvenience and is usually not serious. When a person with COPD gets a cold, it can become serious. A cold may develop into bronchitis or pneumonia. Your bronchial passages become swollen and clogged with secretions that become infected. Infection can cause damage to your bronchial linings creating a safe haven for bacteria to grow. Aside from infection, you become more sensitive to respiratory irritants. Tobacco smoke, perfumes, paint fumes, barbeque smoke and cleaning solutions--previously well tolerated odors--may trigger an exacerbation. Again, your airways become swollen and blocked by secretions and your breathing is more difficult.
The exacerbation layer is the main cause of disability from COPD. Fortunately, it is also the layer that is most treatable. Exacerbations can be prevented. Avoiding toxins, paint fumes, hair sprays, infections and other causes of exacerbation along with vaccinations against the flu or specific types of pneumonia may make a difference. Avoiding physical contact with people who have colds or flu can prevent the spread of infection. Hand washing both by the giver and receiver will often prevent transmission of a cold. Good hand washing can be accomplished both in the home and out in public. When soap and running water are not available, newer hand cleaning products are convenient and effective substitutes.
In spite of the best preventative measures, exacerbations still occur. They can and should be treated well in their earliest stages. This means that you must become knowledgeable about your disease, do a regular self-check of your breathing status and respond promptly and effectively. Your self-check will detect any change in breathing status--the key is change. The change you are detecting could be an increase in shortness of breath, less ability to exert, change in cough and sputum amount or color, fluid retention or fever. When you detect a change indicating an exacerbation, you should immediately call your physician and also immediately follow your physician's prescribed course of action. Ideally, your physician will have prescribed medication for you to have in your medicine cabinet to be taken in the event of an exacerbation. A five to seven day pulse of prednisone and an antibiotic effective for your disease may be prescribed by your physician with specific instructions on their use. Also, you should ask your doctor about using higher doses of your inhaled medication during this period.
Waiting for several hours or days risks allowing the exacerbation to become more advanced and promote lung damage. When lung destruction occurs, your body must undergo a repair process that takes time and drains your energy; it becomes a lengthy recuperation. Thus, it is necessary for you to learn to recognize the exacerbation process in its earliest stages and immediately initiate your planned treatment. This concept is consistent with a general notion in medicine that we can treat almost any condition if we can catch it early enough.
In effect you are developing a collaboration or partnership with your physician. Thus, you have a set of responsibilities requiring some training to care for yourself on a daily basis. Your role is self management, which includes prevention, adherence to a medication schedule, effective self administration of your metered dose inhalers, regular exercise, and exacerbation management. Your physician's role is to provide direction in addition to the usual physician responsibilities like diagnosis and prescribing treatment. Communication between you and your physician is essential. When you call your physician with an exacerbation, be ready to report the changes in shortness of breath and your secretions, whether you are wheezing or tight, have a fever or increase in your weight. When you see your physician for a regular office visit, you should likewise bring a list of pertinent changes in your condition. Also, bring a list of medications and your questions. Your physician visit will be more effective.
Self management does not have to end when you have to be admitted to the hospital. You can participate in your care while in the hospital. If you are skilled in the use of your metered dose inhaler, you can be assigned by your physician to take doses in between your nebulizer treatments. Your physician may direct the respiratory therapist to monitor your safe and effective use of your metered dose inhaler. Your metered dose inhaler is just as effective as the pressure driven nebulizer if used properly. You can do some walking to keep up your level of conditioning in the hospital. Additionally, walking will help to mobilize your secretions. If needed, your physician may order physical therapy to assist you and insure your safety. You can learn to cough effectively, in order to clear your secretions. Thus you can help to open your airways and clear infection in cooperation with your physician, nurses, and therapists. While some physicians are open to such patient participation, others are not. I believe that we will be seeing greater patient participation in the future.
In this book, Doctors Carter and Nicotra, two leading experts in the fields of pulmonary medicine, pulmonary rehabilitation and exercise, present you with a lucid and comprehensive description of your disease and ways you can manage it. Along with this critical knowledge, you will learn how to accept the disease that will have so much impact on your life. You will learn about your medications, how they work, their side effects and the importance of adhering to a good medication schedule. Understanding and acceptance of the disease are the first steps in good disease management. You will learn coping skills, nutrition, and the unique value of maintaining an exercise program. With the knowledge these authors impart in a clear, concise and friendly fashion, you will be able to work intelligently and collaboratively with your physician.
The third author is a remarkable patient, Jo-Von Tucker, who eloquently describes COPD from her personal point of view. Her hard road to acceptance granted her the insight that eventually enabled her to adapt by designing a workable and fulfilling lifestyle. She points to her role in creating a patient support group and how helping others has enriched her life and carried her through hard times. Support groups help people who have been isolated and darkened by chronic illness. She describes her own success story with well-lit guideposts. She creates a repertoire of memories that assist her through the hard times. She effectively creates a road map to successful attitude management with a practical approach.
The overall message emanating from this book tells us that it is not only possible and feasible to participate in your medical management--it is downright necessary. You can and should live a quality and rich life. This is a book that you should share with your doctor just as doctors should share it with their patients. This book should also be shared with your HMO, so that they can better understand how your participation can lead to good cost-effective COPD disease management.
I congratulate all three authors on a job well done. This book will potentially touch the lives of 15 million people and their families victimized by this tobacco-related disease. Unlike most popular books on COPD, this book should be read by patients and their physicians and the entire health care system. As medicine is becoming more technical, this book can serve as a nifty source for physicians and patients to share the same concepts leading to effective patient-physician collaboration.
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Courage and Information Readers praise | A book to help you help yourself | Foreword by Brian L. Tiep, MD | Foreword by Thomas L. Petty MD | Introduction | Table of Contents | The Devastation of the Diagnosis (Jo-Von Tucker) | Appreciation of Jo-Von Tucker | Feature story | Courage: Authors | BUY Courage and Information | Seeing the story
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