I found this on another site, and thought it was worth sharing:


The most dreaded, misunderstood, misinterpreted, misused, destructive term in COPD, End-Stage. The newly diagnosed, or those with first, second, and third stage COPD may never have heard or are not really that familiar with the term end-stage. But, when you reach the fourth stage one day, a medical professional will use the term end-stage to describe your COPD. The first time most people hear the term end-stage it sends them into a panic because they think it means they are at deaths door. Nothing could be further from the truth. I have had stage 4 COPD for 17 years, (end-stage) and Im still here with no END in sight. Most long-timers in the COPD community hate the term end-stage and refuse to use it in the groups, blogs, other writings, or conversations. They are well aware of what hearing the term (to describe your condition) for the first time does to a person. As I was looking over the survey on COPD posted by this site after one of the results with stage 4 and in parentheses the term end-stage which prompted me to write this.

When a person with COPD hears the term end-stage when describing their COPD they automatically think that life is over. As soon as they hear the word end come out of a medical professionals mouth, (doctor, nurses, therapists), they hear nothing else after that point. Their emotions take over any rational thinking, and they cant believe they were just told they are going to die. Phrases like, it cant be, its not true, how can I tell my family Im going to die, and how much longer do I have to live, come pouring out of the suddenly extremely depressed & overly stressed COPD sufferers. Life is tough enough with stage 4 COPD the added stress, anxiety, and depression, caused by the term end-stage is not needed.

The medical professional trying to explain end-stage doesnt mean a person is going to die, its only a clinical term used to denote that a person has reached stage 4 on the scale they use to measure the severity of COPD. What medical professional dont realize is that no matter what they say after the term end-stage is used, the COPD sufferer is convinced theyre dying. By the time the COPD sufferer gets to stage 4, most know that means their condition is very severe so when end-stage is used it must mean theyre dying.

For a lot of COPD sufferers once a professional users the term end-stage to describe their condition, they just signed the death certificate of the person. The depression, stress, anxiety, and other physical illnesses that phrase causes the COPD sufferer, it becomes a self-fulfilling prophecy. If youre going to use end-stage it should be added to the scale as the fifth stage and used to indicate the true meaning of the words. After stage 4 on the scale you could put stage 5, end-stage Definition; you are maxed out on all COPD medicines, treatments, procedures, or operations available by the medical profession at this time. The only thing that will improve your COPD is a medical miracle or divine intervention. As long as there is a procedure, medication, treatment or operation a person can receive, they are not end-stage and they should not be referred to as such. The way the term end-stage is used by the medical profession these days serves no purpose other than to needlessly upset COPD sufferers.

As I said in the first paragraph, Ive been a stage 4 COPD sufferer for 17 years; for the last eight years I have been end-stage. And when I say end-stage I mean I am end-stage. There is no medication, treatment, procedure, or operation that will improve my COPD in any way. Not any of my doctors, (general practitioner, pulmonologist, cardiologists), will perform any invasive procedure on me. I cannot even have a biopsy done on the nodule growing in my lung to determine if its cancerous. Because my doctors feel the procedure alone would kill me. I dont normally talk about that aspect of my condition; the reason Im doing it now is to let you know when you eventually hear end-stage youll know it doesnt mean youre dying. Even though I am end-stage I still live a fairly normal life. I do think a lot slower than others, rest a lot, but I get the job done. I live alone, do my own shopping, housework, have lunch dates, and I go on road trips once or twice a year. I cannot fly but I can drive and last summer I drove the 850 miles from my house in Michigan, (where I lived at the time), to visit my aunt in New Jersey, brother in Long Island, and to take my grand-kids into New York City to the museum of Natural History, and a boat ride around Manhattan which stops at Liberty and Ellis Island. I havent done a trip yet this year due to the fact I moved, but, now that Im settled in Im planning another trip to New Jersey or Florida this fall. I live in North Carolina now, so depending on where I go will be another 800 mile plus trip. I do all of these things in spite of the fact Im on oxygen 24/7, sleep with a non invasive ventilation machine, (I also use it during the day when needed), & have chronic heart failure. It just takes a little planning and a lot of determination. Dont get me wrong, there are a lot of things I used to be able to do that I could no longer do. So when I was informed there wasnt anything else the medical community could do for me, I began making changes in my environment and taking precautions that has allowed me to survive as long as I have, and if I can do it, so can you. After all end stage is a small term that could be erased from the vocabulary very easily. And if you ever do become truly end-stage, like me, you learn the art of balancing and teetering on the edge. Even with end-stage COPD there is life, and with a lot of effort you can make it a good one.

Breathe deep and easy.