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Advice:
End stages of COPD
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What exactly are the symptoms of the end stages of COPD?
Posted on 11/19/09, 06:37 pm
13 Replies | Most Recent Add Your Advice
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Reply #1 - 11/19/09  7:30pm
" From the TCMC Chronic Lung Disease Forum.
The article was written by Mark Mangus, RPFT, RRT, RCP
Respiratory Therapist & Pulmonary Rehabilitation Program Coordinator in Texas.

The term, or label "END STAGE COPD", is as 'relative' a term as there can be with regard to all of the various disease and conditions to which "end stage" is applied. For instance, if I say one is in the
'end stage of pregnancy', there is a limited application that can give the assessment meaning. Obviously, that label would imply that birth is imminent, and in a reasonably short period of time.
As well, end stage renal disease implies that the kidney have failed and no more can be done to improve or restore adequate function, therefore death may be imminent. The same would apply to end stage cancer, etc. for other more defined conditions/illnesses.

In the case of lung disease, there is no ... I repeat .. NO generally agreed upon definition of what constitutes " end stage COPD". I guarantee you, if I asked each of the pulmonologists who practice not only at my institution, but all over town, to give me their respective definition of end stage COPD, no two of them would agree. To make matters worse, it is a term, or label which is thoughtlessly and
carelessly brandished about by all manner of health care professionals, without any generally agreed upon definition.

Some would refer to numbers on tests. For instance, if one's oxygen level (P(2) on an arterial blood gas sample is less than '40 (mmHg) while breathing 'room air', some would say that person has 'end stage' disease. Some consider pulmonary function values, contending that when one drops below certain percentage of predicted normals, they have 'endstage' disease. Still others measure by the degree of activity, or function one is capable of. Yet others pick and choose from a
combination of the aforementioned categories.

If we really want to be comparably accurate with respect to other more clearly delineated endstage disease states, we would probably have to define 'truly' end stage COPD as pertaining to those persons whose lung function has deteriorated to such a degree that they can no longer exchange BOTH oxygen and carbon dioxide sufficiently to sustain minimum physical function to meet daily needs such as eating or getting out of bed to go to the bathroom, DESPITE assistance from oxygen and medications or treatments aimed at improving, enhancing or maximizing lung function. I believe that such a definition would have to exclude mechanical support of ventilation as a 'determining' factor, but would certainly have to INCLUDE mechanical support of ventilation in those to whom it would be applied. Additionally, I think it would be fair to apply the term to situations in which a clinical diagnosis, or anticipated disease changes would result in the above stated condition within
a predictably short period of time (not to exceed a matter of months to one year.)

This definition may sound pretty severe, but I think in the case of chronic lung disease, it is the only FAIR definition. There are a lot of people running around who have measured values of various
tests of lung function who would be labeled as 'end stage' by more liberal definitions. Indeed years after would have been expected (or predicted) to succumb, they are 'chugging', along albeit struggling for breath, but very much alive and functional. By the same token, there are others who
do not have severely reduced or abnormal measures on pulmonary function, who have, for what
ever reason, given up and 'sentenced' themselves to death by default and/or indifference, ceasing
to try to function.

For my money, I try to avoid the trap of equating one's degree of illness with such a term as
'end stage' . In fact, I think that when one employs that term, it should be in such circumstances as
it would be fairly obvious to all in observance --- medically trained or not, that he person is in the
end stages of the disease. I have come to adopt this attitude as the result of my 27 years of dealing with pulmonary medicine, and 10 years experience in pulmonary rehabilitation, during which time,
I have cared for over 1000 people with COPD -- most of whom were label as having "end stage COPD." Most of them realized Incredible AND unpredictable improvement in their disease state,
not to mention their lives, overall. The bottom line here is that even though they were labeled as having end stage COPD, it did not have meaningful bearing upon their actually achieved results. "
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Reply #2 - 11/20/09  8:32am
" Nellie; thank you SO much!! EXCELLENT explanation of "end stage".
I gave up at one point, when my ex pulmonary doctor labeled me
"end stage" and gave me 1 year or less to live. Sorry, to disappoint
that fine doctor; but I continue to live on, way past his prediction of
my check out time. (Insert massive sarcasm, please)

For anyone reading this post, please DO ignore any doctor telling you that you are "end stage". Never, ever, give up. As the article
Eillen provided, no two doctors can even agree on what "end stage" is? Keep hanging on. Blessings to all. "
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Reply #3 - 11/20/09  11:59am
" Nellie, this article is so needed in this forum because we all have asked that question at one time or another. Especially if you have severe emphysema.

When I asked my doctor if I had end stage he smiled and said
"we all are considered end stage." I got it and I have never asked that question again. "
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Reply #4 - 11/20/09  12:34pm
" Brilliant post Nellie,i'm sure this will help lots of people who have been told this,maybe we should bump this one up now and again for all the newcomers.

Hugs Ellen. "
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Reply #5 - 11/20/09  1:20pm
" Serenitys2, I don't think doctors use the term "end stage" much anymore. Some for the phsycological stand point and for some of the reasons mentioned by the Respiratory Therapist in Ellens posted article! (I like all the abbreviations behind the guys name, everything except M.D.! I've yet to meet a Respiratory Therapist that doesn't think they know more than the Doctors! I guess because their job is to pep you up and take the fear out of the diagnosis!?!)

Anyway, to try and answer your question,here are some of the symptoms of severe(or end stage) emphysema;

*Short of breath, even at rest
*weight loss
*loss of appetite
*chronic cough
*low BMI (Body Mass Index)
*low FEV1
*constant fatigue
*poor quality of life
*repeated hospitalizations


Here's a web page that might help. You can also look on the American Thoracic Society's web site.


http://www.webmd.com/lung/copd/emph... "
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Reply #6 - 11/20/09  3:35pm
" Nellie, thanks for posting this! I always enjoy Mark Mangus' explanations ofr all thing pulmonary. He's a brilliant therapist.

Yes, I also think this should be bumped up occasionally for the newbies.
Hugs, Sue "
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Reply #7 - 11/20/09  4:38pm
" I think end stage is a term and its what we make it. At first [i havent been told what stage yet, just severe copd], I thought i was ready to roll over and die, that i was fighting against an unknown assailant that was attacking me daily regardless of what i did...i got very depressed and had what i call my pity parties & days i just wanted to stay in bed and recluse myself from the world......but then i realised that the remainder of my life was going to be what i make of it, regardless of how long that may be, i needed to make the best of each day. I try to think of this as my second chance [my pneumonia was a hard hit to my body, my first hospitialization, and i almost died]....even though i hate being on oxygen 24/7, and using all these meds and what not, thay do seem to help. My doctor prescribed me cymbalta lst week, and thats seemed to help with my moods. Going outside to walk the dog helps to get me out of the house. I dont really know what stage I am in as far as my illness is concerned, all I know to do is enjoy each day, tell my kids i love them and do my best. "
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Reply #8 - 11/21/09  10:15am
" I agree they shouldn't use the label end stage as freely as they do. It is scary. I was labeled with end stage emphysema in 2005, and didn't really find out what it meant for a year or more. To me it means modern medicine has no more to offer you at the time to get better or heal. One can still live for years! Keep moving, the more you move the healthier you stay. "
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Reply #9 - 11/28/09  12:25pm
" Decided to reread this post, as my Emphysema has worsened.
If, I am to believe Digitinc's description of "End Stage"; then I am definitely end stage. Anyone know how long I have left?

P.S. Thank you Digi for your informative response to the original post. "
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Reply #10 - 11/28/09  1:47pm
" i really dont know. But well all face them in a different way. All COPD paients face things differently with different symptoms. "

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