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Monday, February 15, 2016

Learning about end stage COPD

The following post was written by me and published at on September 29, 2015.

So you, or a loved one, have been diagnosed with End Stage COPD.  What is this, and what does it mean for you or your loved one?

First off, it must be understood that there is no generally accepted clinical definition to End Stage COPD. What it means for one physician may not mean the same thing for another.  In fact, The Global Initiative for Chronic Obstructive Lung Disease (GOLD) defines "severe COPD," but it does not even mention the phrase “End Stage COPD.”

That said, here is what End Stage COPD might entail, if this term is used by your doctor.

Stage IV COPD or Severe COPD. What is it?
  • Severe airflow limitation, meaning it’s very hard to blow out a candle
  • FEV1 during pulmonary function testing (PFT) will be 30 percent or less. Unlike asthma, this does not improve with medicine. However, medicine can help you take a deeper breath and reduce the feeling of dyspnea (air hunger).
  • You get winded (short of breath, dyspnea) with minimal exertion, meaning you may get winded going to the bathroom, or even brushing your teeth.
  • You have trouble engaging in activities, meaning you might have to skip out on that birthday party or wedding.
  • You have frequent flare-ups, that sometimes require hospitalizations.
  • You take a variety of medicines to keep your airways open.
  • You require supplemental oxygen, probably around the clock.
  • You may require CPAP to keep your airways open while you are sleeping.
  • You may require BiPAP to assure you take deep enough breaths, and to assure you are adequately oxygenating while you are sleeping..
  • You may have other ailments with it, such as frequent pneumonia, heart failure, osteoporosis, depression, anxiety, and hypertension.
 Others will diagnose it when you develop Cor Pulmonale and Congestive Heart Failure.

Cor Pulmonale. This is when the right side of your heart becomes enlarged after years of working hard to pump blood through diseased lungs. This makes it a weaker pump.

Congestive Heart Failure (CHF). With COPD, this usually begins with cor pulmonale. When the left side of the heart becomes too weak to pump blood through the lungs, this leads to left heart failure or CHF. This is when the heart is too weak to pump blood through the body, so blood pools in the ankles causing pedal edema. This can also lead to pulmonary edema, or fluid backed up in the lungs, making it hard to breathe. To learn more, read my post on How COPD Affects the Heart.

CHF may cause COPD flare-ups, or exacerbate them. Thankfully, modern medicine can both prevent and treat flare-ups caused by heart failure.  Still, once a diagnosis of heart failure is made, this is often considered the end stages of COPD.

Some, however, suggest that providers and caregivers avoid using phrases such as "End Stage COPD" and "Advanced Stages of COPD" altogether.

Okay, so what does this mean for you or your loved one? As Jane Martin once wrote for us, “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.”

She is right: it is not a death sentence. However, it’s your doctor’s job to tell you when he thinks your disease has progressed to this point.  It’s a way of saying: “Hey, this is it. If you want to continue living, and if you want to have some quality in your life, you are really going to have to work at it." 

I will describe some things you can do to live longer with End Stage COPD in my next post.

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