COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
"End Stage"
The following 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.
Somebody, I honestly don't remember who, researched this phrase one time and
came up with how it originated and what it means in medical terms. "The term
end stage originated in 18th century England. The patients were lined up on
stage and paraded before the medical students, in a large auditorium. Each
patients symptoms were given to the students as they came across the stage
and diagnosis were made. Pulmonary patients were placed at the end of the
stage or last in line because at that time there was no known treatment.
Ergo, end stage." Doctors have carried forward because, for lack of a better
term, they believe they have done all they can do medically!!!
I believe, however, end stage depends on the patient. If you go to bed, have
someone wait on you, give up on life and in general say "I quit" that is
endstage. I was diagnosed end stage 4 years ago and did all those things
myself. I found this group joined and I am in better shape now than I have
been in about 6 years and still working on it. Your end stage depends on your
attitude, your medical support, exercise, diet and 100% commitment to life
and hard work. My opinion for what its worth. Take care. http://www.olivija.com/endstage/ Hope this helps...Love to all, Holly
The following 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.
Somebody, I honestly don't remember who, researched this phrase one time and
came up with how it originated and what it means in medical terms. "The term
end stage originated in 18th century England. The patients were lined up on
stage and paraded before the medical students, in a large auditorium. Each
patients symptoms were given to the students as they came across the stage
and diagnosis were made. Pulmonary patients were placed at the end of the
stage or last in line because at that time there was no known treatment.
Ergo, end stage." Doctors have carried forward because, for lack of a better
term, they believe they have done all they can do medically!!!
I believe, however, end stage depends on the patient. If you go to bed, have
someone wait on you, give up on life and in general say "I quit" that is
endstage. I was diagnosed end stage 4 years ago and did all those things
myself. I found this group joined and I am in better shape now than I have
been in about 6 years and still working on it. Your end stage depends on your
attitude, your medical support, exercise, diet and 100% commitment to life
and hard work. My opinion for what its worth. Take care. http://www.olivija.com/endstage/ Hope this helps...Love to all, Holly
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
maybe that's why end stage doesnt' mean anythig to me!
no one to take care of me if i stayed in bed! AND...you can't push me to the end of the stage! da dum!
i'll just elbow myself right back into the middle! hehe
That happened to my girlfriend that died from the results of breast cancer. She was go sick and they wouldn't ok hospice. Whenever she asked how she was doing or complained about aches and pains they would tell her it was probably from the chemo.. Finally after her family fought hard enough they finally ok'd hospice. She lived 10 days after that. She needed it months earlier.
If 50 people were lined up, from say one year to one hundred years of age, all healthy, those that are 100 would likely be considered end stage, too.
Most of us love life too much to ever want to leave it, but, actually it's pretty natural. Nature has made it that way as a way to keep balance, so young ones have their turn, otherwise, the earth would be so over populated it could not sustain itself. There is the thought, though, with people living so much longer and more babies being born, we are close to that point now.
For me, having COPD could be better, could be worse. It is what it is and other than doing what I can as far as educating myself and taking care (meds, etc.), I don't fret much about it anymore.
Thank you Holly
Jo x
Come back? To the Pulmonary Clinic? What was he saying?
He explained that he has done everything he can for me; as far as
medications; etc. The receptionist where you check out, took out the card they normally write down you NEXT appointment on. Then she started acting nervous. She said she was uncertain of the doctors notes, and apparently I did not need another appointment; but someone would call me when "they" had better understanding of the doctor's notes. Um? I have no appointment.
Normal for me to go to the Pulmonary Clinic every 3 months. I am still uncertain about the meaning of all of this? The Pulmonary Doctor had told me that he preferred to not use the words "End Stage"; but that I need to realize that I have very very severe Emphysema. He told me that did not mean I would die from Pulmonary Failure. He said I could die from heart failure; blood clots in my legs; or a stroke.
While driving home; I thought I could die from a car wreck if someone ran a red light and wiped me and my old car out.
I could fall down the stairs at my apartment complex, and break my
neck. Anything could happen to cause my death at any point, on any day of any year. One certainty after we are born-----all of us will die at some point. No one knows when, or how old we will be.
No one can predict when we will leave earth, or what will cause our departure. Note: Previously I was turned down for Hospice because the specialists put their heads together and decided I had
somewhere between 6 months and one year. Here in Oregon, you
have to have 6 months left to quality for Hospice. Here again, there is NO way for anyone (not even all the specialized highly trained doctors) to know for certain that any person has less than
6 months to live.
now, i just sort of avoid him. if i have a problem....i know i can call and get it. otherwise, i use my regular doc (which, by the way, i try to avoid too).
maybe your doc just thinks thah your meds adn all are stablized. nothing more.
margaret
Don't be bummber.. it could be a couple of other things
. my Pulm guy does the same with me. Unless I have a flair he prefers to see only about every 6 months to check my PFT's unless I need him. My Primary Dr. handles everything else.
If your Pulm guy doesn't want to see you cause of poor prognosis, then he also should be able to sign you up for Hospice. My Mom was on it in Oregon and though lived past the 6 month deadline by a couple of years or more, they just renewed every 6 months. If he really thinks your that bad and doesn't want to see you cause of it, them make him Dr. Up and place you on Hospice.. otherwise, he may just be doing like a lot of the specialists and having your primary handle you cause your where seeing every 3 months isn't making changes.... at least it reduces the copays
I wouldn't allow your doc to write you off completely ie no more appointments just my opinion but I do feel copd needs monitoring always. Even stable mild to moderate copd albeit annually. Unstable or severe copd I feel should be 3-6 monthly.
Take care
Jo