"You have end stage COPD..." is possibly one of the most frightening - and confusing - things a person can hear.
Let's talk about the four stages of COPD and what it means for you. Here are three simple steps that anybody who has heard these dreaded words - and anybody with chronic lung disease for that matter - should follow.
1.) Get the Facts Straight.
When somebody, anybody, tells you you're at a certain stage of a disease, ask questions.
First, find out what it is that determines that stage and, next, where you fit in.
The very first question I ask when a new patient comes in to Pulmonary Rehab is: "What has the doctor told you is going on in your lungs?" The answer tells me a lot about what the patient has been told, what they understand about it and what it means to them. (It's interesting to note that one study revealed that over 26% of patients were unaware of what their COPD diagnosis meant!) Most of the time when I ask patients what they know about the extent of their lung disease, I find they don't know a whole lot. So, we sit down and take a look at the pulmonary function test results and see what's what.
2.) Know and Understand Your Numbers.
If your doctor gives you a number from the result of your pulmonary function test, or spirometry, he or she will probably tell you a percentage. For instance, "You have 50% of your lung function left." Some patients come into our program thinking that if they have been told they have 50% lung function, it means they have one good lung and one bad lung. Not so.
Here's what we're talking about when it comes to percentage: When you go in for a lung function test, the technician asks you some questions. How old are you? How tall are you? Are you male or female (hopefully that's obvious!)? What is your race? He or she then puts these numbers into the computer that calculates what flow rates and volumes a person like you with healthy lungs would perform. That is called normal predicted.
You do the test - all that breathing in and blowing out - and your results are then compared with the ideal lung function numbers. For example, if a person with good lungs would blow out two liters and you, with your best effort, blow out one liter, your number on that maneuver would be half of normal predicted, or 50%. Most likely, both your lungs are diseased and have a limited ability to perform.
Now let's look at the stages of COPD related to those numbers.
Definition: FEV1 - Forced expiratory volume in one second. The amount of air you blow out in the very first second, a key indicator of COPD.
Stage I: Mild COPD
FEV1 - at least 80 percent of normal predicted. You may or may not notice symptoms.
Stage II: Moderate COPD
FEV1 - between 50 and 80 percent of normal predicted. You usually have some shortness of breath with exertion; and may or may not have chronic cough.
Stage III: Severe COPD
FEV1 - between 30 and 50 percent of normal predicted. You are often tired and short of breath and may have frequent exacerbations requiring extra treatment or even hospitalization.
Stage IV: Very Severe (sometimes called end-stage) COPD
FEV1 - less than 30 percent of normal predicted. You may often be short of breath, even at rest.
It is important to know that one person's numbers don't mean exactly the same thing for another. We're all different.
If that's the case, why should you know your numbers? Well, it is always good idea to know what you're dealing with.
3.) Don't Give Up!
Before you phone your local monument company to have them carve today's date on your gravestone, know that with proper care and treatment you can live for years with very limited lung function! The term "end-stage" is just a term, based on the perspective of who you're talking to. For example, a respiratory therapist who works with severe but stable COPD patients in pulmonary rehabilitation has a different take on your prognosis than a doctor or a nurse who sees patients only when they are sick. In doing research for this post, I read an article written by a home care nurse who talked about patients with less than 30% lung function as being end stage and barely able to walk more than a couple of steps. I'm here to tell you that there are many patients in our program with less than 25% lung function who do very well! So, no, being told you have "end-stage COPD" is not a death sentence. There is a lot you can do, and you can live a long time.
Watch for my next post when we'll talk about where you can go for help and what you can do to stay healthy and how to make the most of day-to-day life with severe (end-stage) COPD.
Jane M. Martin is a licensed respiratory therapist and teacher, the founder and director of http://www.Breathingbetterlivingwell.com and author of Breathe Better, Live in Wellness.