Ten Things You Can Do If You Have COPD
An article in the April 19, 2004 issue of TIME magazine called COPD “The Other Lung Disease.” A highlighted piece in that article said, “340,000 Americans with Lung Cancer — 13 million Americans with COPD.”
COPD is a huge problem and as far as we can see, it is only going to get worse. Even though these numbers might seem overwhelming, know that for you or a loved one with COPD, you are not helpless – and certainly not hopeless! There is a lot you can do to breathe better and smarter, increase awareness, and support pulmonary issues in your community and the world. Here are just a few things you can do to learn more and help yourself and others:
1.) Arm yourself with knowledge
Knowledge is power, especially when you have COPD. Your lungs might not get better, but there is a whole lot you can do to feel better and take control of your life instead of letting your breathing control you. Learn all you can about COPD. Start with the links page on our website and go from there http://www.breathingbetterlivingwell.com
2.) Test your lungs, know your numbers
A person with diabetes knows the numbers of their sugar levels. A person with high cholesterol knows his or her numbers. Why shouldn’t people with lung disease should know their numbers, too? Lung testing at a routine doctor’s office visit should be commonly done in certain people. To learn how you can know your numbers, go to http://www.nlhep.org/spirom1.html If your regular family doctor or internist does routine lung function testing, great! If he or she does not, call the office and (kindly – but firmly) tell them they should, and pass along the above link.
3.) COPD / Alpha-1 – Make sure you have the right and complete diagnosis
If you have been diagnosed with COPD, make sure you are properly – and thoroughly – diagnosed, especially if you are younger than 60. The Alpha-1 Foundation says that everybody with COPD should be tested for Alpha-1 (an inherited form of COPD that strikes people in their 20’s, 30’s, 40’s and 50’s). To find out more about Alpha-1 testing visit www.shortnessofbreathgettested.org Even if you don’t have it, simply knowing about Alpha-1 is important. Some nursing students in their final year of school have never even heard of this disease!
The Alpha-1 Foundation has also launched the National Targeted Detection Program for Alpha-1. This test may be reimbursable by medical insurance and is now available through your physician. The Alpha-1 Coded Testing (ACT) Study at the Medical University of South Carolina (MUSC) provides free confidential testing for Alpha-1 to anyone requesting it. Call 877-886-2383 or email inquiries to firstname.lastname@example.org.
4.) Stay in Shape
Pulmonary Rehabilitation is the gold standard of treatment for adults with chronic lung disease and can be a real lifeline for those who participate. Pulmonary Rehab includes monitored exercise and strengthening activities tailored to the needs of each participant. Education and peer support, and even fun, are also important components of a program. To learn more and to find a program near you, go to http://www.breathingbetterlivingwell.com/basics and click on Pulmonary Rehabilitation. If there is not a pulmonary rehab center near you, call your local health care facility and ask why not!
5.) Read Stories
This might seem simple, but it can really help. One of the biggest problems in life with COPD is that people can feel confused, lonely and isolated in their disease. They sometimes feel as if they’ve been handed a death sentence, or they may feel guilty that smoking caused their illness and they then tend to take too much blame upon themselves. Truth is, you are not alone in feeling this way and you don’t have to take all the blame. Hearing from others who have walked the same road can be helping and healing so you can get on with your life. For stories of real people who have not only survived but thrived with COPD and other lung diseases, go to http://www.breathingbetterlivingwell.com/archive/index.php
For more stories and information on all aspects of lung disease, browse our bookstore http://www.breathingbetterlivingwell.com/bookstore.php
6.) Make connections in your community
Go to meetings of a local breathing support group, or consider starting one yourself. Even if you don’t get out too much, you will find helpful information at a breathers’ group meeting. You’ll also find acceptance and understanding, and maybe a new friend. Also attend lung health events and education days in your area. Some Alpha-1 education days now include COPD, designed to help those with regular COPD as well as those with Alpha-1. For a breathing support group in your area visit http://www.lungusa.org Click on COPD, then Better Breathers Clubs. Call the contact number in advance to make sure that the meeting is being held on that day.
7.) Recognizing Respiratory Therapists
Make sure you know who helped you breathe better the last time you needed it, and take a minute to thank them. It’s hard to believe, but Respiratory Therapists frequently go unrecognized as an integral part of the health care team. Patients and family members often think RT’s are nurses, and don’t realize that we are the lung specialists among allied health professionals. To find out more about these essential RT’s, visit http://www.aarc.org
8.) Spread lung disease awareness
To help increase awareness of COPD, talk with family and friends about what the disease is and how it affects you. They’re probably as confused and worried as you once were! Show them stories of others with COPD. Tell them that although you have COPD, you might move a little more slowly, but you’re still the same you! Get a lung disease awareness magnet, designed by Lori Palermo, who lost her father to emphysema. Visit her site to learn about a family’s perspective on COPD. http://www.loveyourlungsbreatheforlife.com
9.) Finding and sharing support – worldwide
To connect with others living with chronic lung disease not only in your community but around the world, visit an on-line site for education and support. There are several good ones and more are coming along as more people with COPD are going on line. Start with BBLW get to know some of the wonderful help and support available to you. http://www.breathingbetterlivingwell.com
10.) Let your voice be heard!
Learn what is going on in the areas of lung disease legislation regarding medication coverage, air quality, long term care, and other areas. Our lawmakers do listen to their constituents when we speak up and tell them what we think. Visit http://www.lungusa.org and click on ACT Now Lung Action for the latest.
©2006 Jane M. Martin http://www.breathingbetterlivingwell.com
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