quote is from Hospice Medical Guidelines for Determining Prognosis of Pulmonary
Disease- " Determining prognosis in end-stage lung disease is extremely
difficult. There is marked variability in survival. Physician estimates
of prognosis vary in accuracy, even in patients who appear end-stage. Even
at the time of intubation and
mechanical ventilation for respiratory failure from acute exacerbation of
CHRONIC OBSTRUCTIVE PULMONARY DISEASE, six month survival cannot be predicted
with certainty from simple data easily available to the clinician."
What is End Stage in COPD/Emphysema? This is a much argured and debated
issue. The defination varries, depending on who you ask. From time to time I add
"the definations" as I hear it told by others. I think it best to use your own
defination for the term "End Stage," keeping in mind that even though COPD/Emphysema
is the nations fourth largest killer. Most of us die of
related complications. We don't live long enough to die of that, though.
To those Inquiring Minds Who Want To Know:
Subject: Subject: [COPD] [SUPT] End Stage?
Date: Wed, 29 Mar 2000 12:17:22 -0800
From: "Cecil Montgomery" <LMontg3322@AOL.COM>
Somebody, I honestly don't remember who, researched this phrase one
Some people live longer than others with copd. Some people take better care of themselves,they follow exact diets, they exercisedaily and rigiorously. They educate themselves on their disease. But, the people who have the best quality of life are busy, active and not too worried about themselves - beyond reasonable care - and have varied interests above and beyond their illness. In order to have some quality of life you must find something besides your breathing to excite you. It can be anything. A new hobby, new friends, some sort of limited work Hey, even a love affair would work!! No doctor, no person and no statistic can tell you how long you will last. Your lungs are not going to get better and eventually you will stop breathing, but so will everyone else on this earth. There isn't too much point in trying to psych out your remaining time - better to use it as productively and happily as you can. If they ever come up with a foolproof way to figure out 'Endstage' I'll be first in line to hear what it is, 'til then, please don't worry about it and please find the good things in life to focus on.
The article was written by Mark Mangus, RPFT, RRT, RCP
Respiratory Therapist & Pulmonary Rehabilitation Program Coordinator in Texas.
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
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
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
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
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
money, I try to avoid the trap of equating one's degree of illness with
such a term as
Amazing Grace. The organist did An Irish Lullaby (Tour-ra Lura-rah) A Little Bit of Heaven, and Irish Eyes are Smiling. My brother-in-law,
our son and daughter did excellent eulogies, our son specifically paraphrasing Shakespeare's Julius Caesar, "That we came together to praise
our father, not to bury him." There wasn't a dry eye in the placen. Food, drink and flowers were abundant, and we gave everyone a little gold shamrock lapel pin as a memento of Ed. The Irish musicians finished off the evening by paraphrasing "He's got the Whole World in his Hands"
to "...Ed Costello in his hands" with everyone joining in. Out of the 100 or so people there, at least three quarters of them expressed wishes that when the end comes for them they would prefer such a celebration of their life.
the end, I would like to reiterate, that it was not what we feared.
I had gotten the impression from others on this list and things
The only other
thing I would advise is to look into having a "Health Power of Attorney"
drawn up as in opposition to a living will. Once a
I want to leave
you all with a few thoughts. This list serves a valuable purpose.
Ed was very interested in hearing from other people who
you all easy breathing days and the courage andstamina to face the days
ahead with dignity and love.
Joan in Chicago
Sheila was doing very well at the St. Francis Extended Care in Bellingham WA and plans were being made to add a wing to her daughter' Meilani's house. She was very eager to get out of St. Francis and was so proud of her scoot transfers and success at standing for short
periods of time with assistance. She was most excited about having a chance at food she could choose for meals and marked pages in her
new diabetic cookbooks. She was back doing the fancy knitting she was so good at and we all had our orders in for sweaters. We talked
of getting a laptop so she could get on-line for the rest of her stay at St. Frances. On Monday, March 29, 1999 she was sliding backwards
due to a new lung infection. Heavy steroids were administered and she then accepted wearing a breathing mask. O2 levels were up between
10 & 12. For almost a week she went in and out of knowing what was happening and we were sure we were going to lose her. We sat with
her 24 hours a day taking shifts to be sure that she did not rip the mask off and helping her with food and liquid. Kathy was with her on the Saturday evening before Easter and all of a sudden she seemed to be herself again and when Meilani arrived she knew who she was and
talked in loud clear sentences. It was a miracle that only got better on Easter when mom seemed even better.
She went back to a cannula at an o2 level of 4-5. Monday she was even stronger announcing she wanted to get better.
Frustration set in with the realization she had lost a week and was back to a pretty weakened state. Each day as the week passed she seemed
to have less energy and interest. On Sunday, April 11, the nurses told us it would not be long. We wanted her to keep going and had a very difficult time accepting that she could not. She lingered on until Monday night, her mother's birthday, April 12 and then shut those eyes that
wanted to see and do so much forever. Kathy was with her and laid a beautiful bouquet of yellow daffodils in her hand so that she would
always have her favorite flower with her. She was cremated today and her ashes will be scattered off Nobska Point, Woods Hole later this summer. We are very appreciative of all the cards and messages sent by friends while she was ill and want to thank you all for you love and support of our mom. Family could not offer the advice and support of others that live with COPD and she loved her email from all of you.
We miss her
He was getting very weak
from struggling so hard to breathe.
One evening he laid down on the sofa and
quietly passed away.
His wife said there was no struggle or strain.
May we all have such a peaceful release.
Joyce in IL
John of Oz
I think, from time to time, we seem to run across numerous inquiries regarding the so-called "end stage." Are we talking about dying? If so, whether or not we have COPD, everyone is going to face death and what keeps the psalmists and tarot card readers in business is predicting same. We don't know whether our death or the death of anyone else is going to be easy or hard. I think we are in a unique position where we have a pretty general idea of what is going to kill us. However, as we have remarked on the list, many COPD'rs don't die of the disease, per se, we die of related causes. I think the fear is mostly
centered on l, whether we will be incapacitated for a long period of time, and mostly, whether it will be lingering and painful. Isn't this something we should discuss with our doctors, or some other responsible person in our lives. For me, tho I think (and fervently hope) I am a long way
from dying, my doctor and some other "significants" in my life are well aware I do not want to be hooked to a life-support machine (and I have
this in a written will) and I would like to go as peacefully as possible and if this involves addicting me to morphine, so be it - what difference
does it make. I took care of my father in the last stages of cancer and I kept him in his own home with nurses and a very wonderful doctor who supplied morphine as needed and my father was painfree and peaceful to the end. Granted the morphine probably hastened his death by as
much as two weeks, but what difference did that make? Anyway, end stage, middle stage or whatever - we can't see the future - if I could
have perhaps I might have stopped smoking earlier and I think our obligation is to do the best we can at the stage we are in and leave the future to someone who can handle it. Just my ideas and hopefully will not offend anyone
How do you know when someone is in the "end stage", versus having a case Of "severe" COPD? I realize that there may be more art than
science to This but I'm ready for some science, any science, if it's available. Thanks! Don't let the term "end stage" bother you. I've been end
stage for Years. I guess it means that you won't get much worse except maybe post Humusly.
Keep fighting and breathing. On several occasions, this question has been posted, and most of the time, no one answers, but I would like to
take the time to do this. I am on the digest version. Each morning, it is the first thing I read. AS I read this question and answer the other day, I decided to take the time, Unless you have been there with a family member who died, when the end stages finally did come, or you are their
now yourself, it's a difficult thing to answer. My mom died in 88, we moved here to AL in 82, she was retired, from her nursing aide job, and
had never really had breathing problems, although her 3 siblings all died from COPD related illnesses at the ages of 50. In 85 I begin to notice
she was having difficulty breathing, not all the time, and she had stopped smoking in 1970. The money she spent on smoking, she used for yarn, and made a beautiful afghan, She taught herself to crochet. As time went on here, and she begin to take endless trips to the hospital, after the second or third trip, a pulmonary doctor told her she had mild COPD, and it was a terminal and irreversible illness. Well mamma didn't hear that, but I sure did. In 86, things really got worse, she began to loose weight, quickly, and she had her shoulders pulled up, with the osteoarthritis
hump in her back. From about 9-86 until her death in February 88, there were about 14 or 15 hospitalizations. I kept thinking how much worse can this possibly gets. I should not have ask, our son-in-law is a RRT, and we had ask him one time about End stages, and as much as he didn't want to answer her he took the time, and did, explaining, that at the end stages of this illness, that it would take more oxygen, for to open and
close her eyes, than her body had, and at this point she would bedridden. I remember mamma laughing and saying, that wont happen, cause you will never catch me in bed all day. In December 87, she had pneumonia, was hospitalized again, she also had a living WILL, if your family
member doesn't have one, insist they do this for them selves and for the family. She spent 2 weeks in the hospital, came home, and the next morning, awoke, and we realized she had a stroke in the early morning hours that morning
Back to the hospital, the stroke was severe. She lost her ability to speak, and swallow, the catheter was still in, and from then on, it took about
one month, before she took her walk with God. Not being able to eat, she didn't know this, she was unable to recognize things like this, even though her breathing, was not as bad as it had been. The physical characertists began to change, one day as I was brushing her hair, she reached
to pull her leg, and as she did this, a horrible expression, came on her face, she tried to ask me, where her leg had gone, and with so much compassion, I explained to her, that the stroke, had taken many changes, and she had lost weight, and that was why her leg was so thin. From
that time on, she knew herself she was never going to get out of bed again. Ten days before her death, her leg was broken, in bed, they put a
cast on it, but didn't set it, they knew as we did that she would not be there in two weeks, to change the cast. The morning of her death, we
knew instantly that was the day God would come for her. We told her, and this big smile came to her face. She was so happy, and exhausted,
but it was ok with her. I had been given my first Provential inhaler that day, as I was experiencing Shortness of breath also. By 8 PM, she had gone into fetal pocission, and moved no more. She had been talking until that time, as we sat and held her. Her head was burning up, fever of about 105, she was given Tylenol, and we decided not to go to the hospital, her living will gave us that option. You could hear fluid building up
in her lungs, and we tried getting it up with suction. Finally about 10:45 PM, her heart started to slow down, and it finally stopped, but it beat
again 4 more times, stopped once more, beat three more times, and then stopped one last time, And it never beat again. She was in our arms,
and we kissed her one more time. After waiting for this day, and God had been waiting with us all day long, the end of her life was so peaceful
and quiet, not like it had been for the past 11 months. In January 89, I was diagnosed with Alpha Antitrypsin Deficiency and I just prey, mine
will be as calm as hers was. Don't fear death, it is just part of life. I just hope this can help some of you understand. If you would like to email
me privately, please do so.
God bless you all, Lynda Lindsey.
Dana,I am definitely standing in the shoes of endstage. I think the biggest lesson I am learning is endstage amplifies whatever
coping or non-coping mechanisms we've already accrued. So, if fear is a big part of my feelings about CF, it becomes FEAR
at endstage, because of so much shortness of breath after mild exertion or even just sitting. If guilt is what I live with then
it becomes GUILT you rpm in your head all the things you did or didn't do to bring your body to this frail place. If a "positive self-image only if you look able-bodied" is what's part of your head set, then SELF-HATRED will stare back at you in the mirror, as you see tubing hanging out of your nose, or yourself sitting in a wheelchair. Dang, I sound like the Reverand Adina! What
I am trying to express is I feel its just as important to get our emotional selves tuned up, as well as our physical selves. There
is a reality for many of us that no matter how much exercise we do, how fastidious we are with CF care, the lungs still wear down and eventually we become more disabled. So that's where I say screw the guilt. I took good care of myself, swimming, treatments, ivs, before I hit endstage, but even when I slacked off, I had a great quality of life and that's what counts. I remember reading Paula Black's essays in IACFA. She was my role model. A few years older, much more disabled than me,
but such spirit, humor, I was convinced she was invincible. Every time an issue arrived I couldn't wait to tear it open and read about Paula's latest adventure and words of wisdom. And then, a few years later, she died and I realized it doesn't matter
how good, intelligent, savvy, even health-concious we are, this disease still ends our lives prematurely. Being good has NOTHING to do with living longer. Sometimes its genetics, luck, some aggressive care(but not always!). When I first hit real endstage back in December I was so full of fear. I was sure I would die soon and actually wanted to a tiny bit because the
idea of being so disabled seemed unacceptable. Thank goodness that passed, and now living with a severe disability is much more bearable. It IS a challenge and that is why letting go of fear, guilt, and being okay looking like a wheelchair/oxygen
poster gal is critical. I still cry about my losses, my dependency on others. But I have made space for where my new body is
and life is still a good place to be. I also know that when I can no longer catch my breath that I can choose to say enough and have the good death I deserve (at home, surrounded by friends, riding out on a great wave of love and morphine).
So Dana know you will get through this and that down the road, Club Endstage really isn't a bad place to hang. We got ice
cold beer, homemade salsa, and rockabilly on the juke........Take care, Adina
June 9, 1998
One of the generous gifts of aspergillus infections is hemoptysis. That may be a reason for the bleed, or you could just have
an infection that needs ivs or you may have just coughed too hard and broken a capillary or fill in the blank. If it gets alot
worse, you should probably check in with your doc, but its so common to cough up a little bit of blood now and then, most
people don't stress on it. I totally agree with the drinking cold water, putting ice pack on chest to relieve it. By the way, what
are you doing to manage your aspergillus? I take sporanox daily and it seems to help, I haven't re-cultured it. Take care,
I just recieved the dreaded call from my transplant coordinator, the one that says "I am so sorry Adina, but because of this certain resistant bacteria we are going to make you inactive." What I wasn't expecting was that it wasn't because of bacteria-no, couldn't be that simple. Instead they found XC VCC three strains of yeast, with numbers of 100 each.
(ten is normal) Somehow I have enough in there to open a bread factory and then some. The yuck news is that I have to
inhale amphotericin, aka amphoterrible, twice a day and I heard it can make the lungs tight, as if I already didn't have
enough problems. The good news is that if I do it and it works, its only for a month. I don't know about others but man, sometimes endstage is such a drag. I've still got the fight in me to take on this new regime, but its sad to see my body more
and more fall apart. I feel like I'm up on a rickety roof during a torrential rainstorm, patching away at the leaks gaping everywhere I turn. New lungs mean a new roof, maybe. But until then, I'll be starting home ivs this week, inhaling
amphoterrible and hope the sun keeps shining as I go back to the top of the world, working "up on the roof". One last
thing, I was thinking that an overgrowth of yeast in the lungs could be related to high sugars I have been running,
especially with Megace(which I have stopped, was making my diabetes way out of control).
Although I don't have a yeast infection or thrush, I was thinking that taking more acidophillus or other products for
candida could help. Has anyone else had an overgrowth of yeast in the lungs and used natural supplements to deal
with it? Thanks all. Take care, Adina
will be Tuesday, 6/23/98 at 1
The Hospice Medical Guidelines for Determining Prognosis for Pulmonary Disease.
"Patients who fit the following parameters
can be expected to have the lowest survival rates. Although the end stages
I. Severity of chronic lung disease documented by:...................................................................................................
cough. Forced Expiratory Volume in One Second (FEV1) after bronchodilator, less than 30% of predicted.
..............B. Progressive Pulmonary Disease.
for pulmonary infections and/or respiratory failure.
2. Decrease in FEV1 on serial testing of greater than 40 ml per year.
II. Presence of cor pulmonale or right heart failure (RHF).
.............B. Cor pulmonale may be documented by echocardiography,.electrocardiogram, chest x-ray, physical signs of
........................right heart failure.
...............B. Oxygen saturation less than or equal to 88% on supplemental oxygen.
...........................................VI. Resting tachycardia greater than 100/minute in a patient with known severe COPD."
It is important for everyone
to keep track of their arterial blood gases (pO2, O2 sats, etc.) Maybe
keep a log each time you
Subject: [COPD] End Stage comments
Date: Tue, 25 Jan 2000 13:30:22 EST
From: Bill Horden <SOBnSA@AOL.COM>
You've said a lot, and you've said it pretty well, but I'd likt to add much more emphasis on three items:
1) Pulmonary Rehabilitation Programs can be lifesavers, regardless of the "stage" your doctor has labeled your disease, because it teaches you to better cope with COPD and helps you believe you can have some control over the quality of your life;
2) a good support system, whether it be family, friends, or other patients, can be invaluable in your effort to slow the progress of the disease, and;
3) a positive attitude and willingness to exercise frequently (together with some stubborn streak) can make each day worth living.
By Nancy Deutsch
NEW YORK, Mar 22 (Reuters Health) -- Dying costs money, and in some cases, a lot of it. Adding financial concerns to the already emotionally draining experience of terminal illness can cause depression in caregivers and suicidal thoughts in the patients, according to a report.
"It's enormously expensive (to be terminally ill)," said Dr. Ezekiel Emanuel, chair of the department of clinical bioethics at the National Institutes of Health in Bethesda, Maryland, and lead author of the study published in the March issue of the Annals of Internal Medicine. On average, it costs Americans more than $30,000 above any insurance coverage to pay for the care required in their last year of life, he said.
According to the study of nearly 2,000 terminally ill patients and caregivers, about 35% of patients who had less than 6 months to live needed help on many fronts -- transportation, nursing care, home care or personal care.
Those patients who were depressed, had poor physical function, pain, incontinence, shortness of breath while walking a block, or symptoms of depression were found to be the most in need of care, the investigators found.
Twenty-eight percent of those with the highest needs spent 10% of their household income on healthcare, and more than 16% of the high-need patients reported that they or a family member had to take out a loan or mortgage, spend savings, or take an additional job to finance the illness.
Patients requiring substantial care were most likely to consider physician-assisted suicide or euthanasia, and their caregivers were frequently depressed, the researchers note.
However, doctors can help ease the caregiver's depression by simply spending some time listening to both the caregiver and the patient, the authors suggest. Caregivers who reported that the doctor listened to their needs and opinions were less likely to be depressed than caregivers who said their physician did not listen.
The report indicates that other surveys have found that patients' fear of being a burden is a primary motivation for requests for physician-assisted suicide and euthanasia.
Doctors should be trained to communicate with families of the dying, Ezekiel said, because they have the skills necessary to make these families feel better. "Doctors have enough experience in death and dying to bring it all together."
He also said society must find ways to ease the financial burden of
dying patients, and to help meet the needs of family members who care for
the terminally ill.
SOURCE: Annals of Internal Medicine 2000;132:451-459
December 2001 . Volume 122 . Number 6
General Thoracic Surgery (GTS)
An artificial lung reduces pulmonary impedance and improves right
ventricular efficiency in pulmonary hypertension
Jonathan W. Haft, MD
Patrick Montoya, PhD
[Osamma Alnajjar, MD
Steven R. Posner, MD
Joseph L. Bull, PhD
Mark D. Iannettoni, MD
Robert H. Bartlett, MD
Ronald B. Hirschl,
Objective: Artificial lungs may have a role in supporting patients with
end-stage lung disease as a bridge or alternative to lung transplantation.
This investigation was performed to determine the effect of an artificial
lung, perfused by the right ventricle in parallel with the pulmonary
circulation, on indices of right ventricular load in a model of pulmonary
Methods: Seven adult male sheep were connected to a low-resistance membrane
oxygenator through conduits anastomosed end to side to the pulmonary artery
and left atrium. Banding of the distal pulmonary artery generated acute
pulmonary hypertension. Data were obtained with and without flow through the
device conduits. Outcome measures of right ventricular load included
hemodynamic parameters, as well as analysis of impedance, power consumption,
wave reflections, cardiac efficiency, and the tension-time index.
Results: The model of pulmonary hypertension increased all indices of right
ventricular load and decreased ventricular efficiency. Allowing flow through
the artificial lung significantly reduced mean pulmonary artery pressure,
zero harmonic impedance, right ventricular power consumption, amplitude of
reflected waves, and the tension-time index. Cardiac efficiency was
Conclusions: An artificial lung perfused by the right ventricle and applied
in parallel with the pulmonary circulation reduces ventricular load and
improves cardiac efficiency in the setting of pulmonary hypertension. These
data suggest that an artificial lung in this configuration may benefit
patients with end-stage lung disease and pulmonary hypertension with right
Publishing and Reprint Information TOP
>From the Departments of Surgery and Biomedical Engineering, University
Michigan, and Michigan Critical Care Consultants, Ann Arbor, Mich.
Supported by a subcontract from Michigan Critical Care Consultants as a
Small Business Innovation Research program from the National Heart, Lung,
and Blood Institute, National Institutes of Health.
Received for publication April 26, 2001.
Revisions requested June 14, 2001.
Accepted for publication June 14, 2001.
Address for reprints: Ronald B. Hirschl, MD, 1500 E Medical Center Drive,
Ann Arbor, MI 48105 (E-mail: firstname.lastname@example.org ).
J Thorac Cardiovasc Surg 2001;122:1094-100
Copyright © 2001 by The American Association for Thoracic Surgery
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