COPD is an umbrella term that encompasses Emphysema, Chronic Bronchitis, Asthma, and Bronchiectasis. People may have one or more of these conditions, and not even know it. But COPD is the 4th leading cause of death in the US, Canada, and Australia today. Statistics show that 20% of smokers get COPD. And 20% of patients with COPD never smoked. Statistics don't mean much when you’ve just been diagnosed with COPD.
Today's doctor's diagnosis of COPD is often met with the question "What's that?" Not many physicians have the time nor the staff to fully address the patient's information needs immediately. And many patients are so stunned at being diagnosed with a lung disease, they often walk out of the doctor's office feeling confused, worried, and scared. Or in complete denial.
Such is the world of COPD. It shouldn't be, but the good news is that it's changing. And changing fast!
The world of COPD is more “out there” and is no longer a disease everyone whispers about. People are talking about COPD and sharing information with one another. They are joining local support groups and networking with on-line groups. They are educating themselves and seeking information that will make their lives easier. Patients have access to a wealth of information, and it’s increasing daily, both online and in printed materials. Commercials on TV advertise medications and options for oxygen therapy users. Doctors have more materials to provide their patients in the office than ever before.
In an effort to continue scientific research on COPD, the COPD Foundation began what will become the largest database of COPD patients in history. The Research Registry is hosted by the National Jewish Medical & Research Center. They are working to collect a database of COPD patients that can be contacted and invited to participate in clinical trials and studies that will ultimately develop new medicines and treatments for COPD. People with COPD, and those at risk, can sign up for the Registry online, or ask that the forms be mailed to them by calling the COPD Foundation’s Call Center at 1-866-316-COPD(2673). All of the information collected is kept completely confidential according to the current HIPPA laws.
Testing is more available than every. A Mobile Spirometry Unit (MSU) has been designed to provide free lung testing by respiratory therapists. People getting tested include those with symptoms and those who are at risk for COPD. Mobile Spirometry is reaching people who would otherwise be undiagnosed for years, enabling them to access medical care at an earlier stage and making their lives easier, if not longer. While there is no cure, with the correct medications and lifestyle changes, people with COPD do better in the long run and have much more comfortable lives. Many people now live 20-30 more years, or more, after being diagnosed. COPD is a progressive disease that can be slowed, sometimes drastically, with the proper care. Early detection gives the patient the edge.
More information on the Mobile Spirometry Unit and it’s schedule can be found here
http://www.copdfoundation.org/Programs/msu.htm
The American Thoracic Society is an international society which focuses on the scientific aspects of respiratory and critical care medicine. They hold annual conferences where state-of-the art technology, research results, and a wealth of information is addressed and presented to hundreds of doctors, respiratory therapists, nurses, and other medical professionals. They offer a COPD Patient Guide in PDF format that can be downloaded here
http://www.thoracic.org/sections/copd/index.html
Pulmonologists are medical doctors that specialize in lung disease and treating people with COPD. They have spent years training for this specialty and provide the best possible care. Recognizing that each patient is unique, "Pulmo's" work with the patient. They are familiar with the most recent medications available, and how they work They are able to better assist the patient in finding what works best for them. They know which tests are needed to fully diagnose lung function, monitor the patient's progress over time, and determine how well a patient responds to treatment.
While a Primary Care doctor may be able to administer a simple test called "Spirometry" in his office to determine a patient's basic lung volume, a Pulmonologist offers more in-depth testing and treatment. The test most often ordered is called a Pulmonary Function Test, or PFT for short. This test provides the Pulmo with an in depth look at lung volume and function, and how well the patient's lungs diffuse oxygen into their blood stream. Both Spirometry and Pulmonary Function tests require patients to exhale forcefully into a mouth piece or tube and take only a few minutes to complete. The PFT may be performed in either the Pulmo's office or a hospital Respiratory Department. Additional tests may include a CT scan of the lungs and a chest X-ray. Combined, the test results allow a Pulmo to fully diagnose and treat each patient with the best possible care available today.
The American Lung Association is a good source for information on Spirometry and other lung functions as well as COPD in general and can be found at
http://www.lungusa.org/
Shortness of breath is the most frequent complaint from people with COPD. It's uncomfortable, and sometimes downright frightening. Everyone gets "out of breath" with exertion, but people with COPD are "short of breath" with little or no exertion. Living with, and managing shortness of breath can be a challenge.
A Pulmonary Rehabilitation program is often prescribed by the Pulmo. It's a highly beneficial program of exercise and education where the patient learns about their lungs and how to do activities with less shortness of breath. Pursed lip breathing, or PLB, is one of the first things taught to patients in rehabilitation classes along with breathing exercises. Both greatly assist in making life much easier for those who have difficulty breathing. Regular physical exercise is also emphasized in rehab. It is particularly important for people with COPD because it helps the body's muscles use oxygen more effectively. Dr. Tom Petty is an advocate of Pulmonary Rehabilitation and has written Essentials of Pulmonary Rehabilitation which is a wonderful guide full of information. You can find it in a PDF format here.
http://www.perf2ndwind.org/Essentials-2005.pdf
The Pulmonary Education and Research Foundation is another wonderful source for information and is located at
http://www.perf2ndwind.org/
The COPD Foundation’s Call Center is a recent addition to the various sources of information and support. Available Monday through Friday from 9:00 a.m. to 9:00 p.m. EST, the Call Center is fully staffed by people who have COPD and have a variety of resources at their fingertips. In addition to help in finding local Rehab and support groups, callers find understanding and support from someone who know what it is like to live with the challenges and symptoms. The Patient Associates are able to share tips with things such as oxygen use while traveling or how to respond to questions from others. Patient and Caregiver Information Packages are available to those who would like to receive them.
Their toll free number is 866-316-COPD (2673)
Caregivers seeking information, advice, and support can also call the COPD Foundation’s Call Center and ask to be referred to one of the Caregiver Associates. Caring for someone with COPD is a loving, but often difficult situation. Feeling helpless, frustrated, frightened, anxious, or angry are emotions that all caregivers go through. Connecting with someone who has been in that role and understands it inside and out is invaluable.
Again, their toll free number is 866-316-COPD (2673)
The COPD Digest is a quarterly magazine that is free to subscribers and available by US mail, online, or by email. It’s the only magazine of it’s kind and is devoted exclusively to people with chronic obstructive pulmonary disease. Call the COPD Foundation Call Center to subscribe, or visit http://www.copddigest.org/ to subscribe and/or read the most recent issue online.
An online source for links to a variety of resources, as well as the largest on-line COPD library, is located at COPD International.
http://www.copd-international.com/links/
Unlike a physical disability, you can't see sick lungs. But you can feel them.
Do you have a cough that won't go away?
Do you cough up mucus?
Do you feel tightness in your chest?
Do you ever feel short of breath?
Do you ever wheeze?
If you suspect you may have COPD, don't wait. Be smart and get tested. Visit the National Heart Lung and Blood Institute’s website for a list of more symptoms.
Signs and Symptoms
And breathe easy.
