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Author Topic: End Stage Kidney Disease (ESRD)  (Read 3959 times)
SierraJim
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« on: February 28, 2007, 12:49:21 AM »

:banghead; :banghead; :banghead; I just can't stand that term.  ESRD.  Heck it sounds like I'm gonna die here!  End stage indeed!  End stage if you don't do anything about it, but kidney disease isn't the only thing that is true about!  When someone has congestive heart failure, we don't label them as "end stage", yet we are all ESRD.  Well, I for one am NOT end stage.  I'm beginning stage of a new life of recovery.  Where do we write to change this awful name?  I can't sit by and be labeled as End Stage!  I'm not end stage. 

Best regards to everyone.

Jim
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Jim
angieskidney
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« Reply #1 on: February 28, 2007, 12:54:13 AM »

You aren't the only one! This has actually been talked about before by others here: http://ihatedialysis.com/forum/index.php?topic=1204.0
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
SierraJim
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« Reply #2 on: February 28, 2007, 01:52:48 AM »

ayyy Thanks Angieskidney!  I'm gonna do something about this.  There must be some place where they make up these names.  I bet it could be changed.  I'm damned if I'm going to go around with a label of End Stage!  Not me Not me Not me! :thx;

Jim
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Jim
AlasdairUK
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« Reply #3 on: February 28, 2007, 03:10:10 AM »

I don't have an issue with ESRD, it does not mean the end for us. All it is End Stage Renal Disease aka "your kidneys have reached the end of their production" and you need renal replacement therapy IE. Dialysis.

Whats in a name anyway?
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94 - PD for 3 months
94 - HD Permcath for 3 months
95 - RLD Transplant 10 years
2005 - HD Permcath 6 months
2006 - 2008 HDF Fistula
2008 - 2nd Transplant
KICKSTART
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In da House.

« Reply #4 on: February 28, 2007, 05:07:19 AM »

I must admit i feel the same way about being called 'disabled' .
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
George Jung
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« Reply #5 on: February 28, 2007, 05:45:16 AM »

Its a term to describe the progression of a disease that we have, not a label.  It isn't like you wearing a pocket protector and everyone in the office designates you as the dork, or if you drive a 700 series BMW and people label you as a pretentious snob.  It will only be a label if you perceive it to be.  Does anyone have a problem with the "label" CKD?  Maybe we shouldn't call type 2 diabetes, type 2 diabetes?  Lets all label eachother as happy little people.  I mean, you are happy to be alive right?
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goofynina
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« Reply #6 on: February 28, 2007, 03:32:52 PM »

Hey, i got an idea, let's make up a new meaning for ESRD, here is mine:  Even Sexier Renal Diva  woohoooo, lol, yep yep, thats me,  (i wish) :P  OK, who is next?  ::)
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
jbeany
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Cattitude

« Reply #7 on: February 28, 2007, 04:16:37 PM »

For the days I'm overloaded and not in the mood to listen to the lecture -
Extremely Sarcastic Renal Delinquent

We can call the lectures -
Endlessly Stupid Renal Drivel

For when I'm hungry -
Everything Sucks on the Renal Diet

For Bill Peckham at the Capitol this week -
Excessively Stressed Renal Delegate.  (Or would Dignitary be better?)

For Epo, for doing this site his way -
Excruciatingly Stubborn Renal Dissident

We can vote for who gets the title of -
 Everlastingly Sweet Renal Darling
(Trust me, I don't qualify for this one. . .)

For all of us -
Everyone Still Refusing to Die

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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

goofynina
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« Reply #8 on: February 28, 2007, 05:11:10 PM »

WOOHOOO, now THAT'S what i'm talking about people, seeeee, ESRD means so much more than what'cha think (or what they say it does)  but WE know better huh? ;) ;)   nice post jbeany  :2thumbsup;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Bill Peckham
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WWW
« Reply #9 on: February 28, 2007, 05:34:33 PM »

I hate the term ESRD which is probably no surprise since I complain about a lot of the terms routinely used in dialysis.  I would much prefer CKD5 since I think it would be very helpful to highlight the idea that kidney disease is a progression from CKD1 to CKD5. My understanding is that is would take the intervention of the Pope and or God to change the term since it is written into all the Medicare legislation. Same reason Medicare uses hematocrit instead of hemoglobin, even though hemoglobin is a better measure it would be just too hard to change.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
goofynina
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He is the love of my life......

« Reply #10 on: February 28, 2007, 05:46:53 PM »

I hate the term ESRD which is probably no surprise since I complain about a lot of the terms routinely used in dialysis.  I would much prefer CKD5 since I think it would be very helpful to highlight the idea that kidney disease is a progression from CKD1 to CKD5. My understanding is that is would take the intervention of the Pope and or God to change the term since it is written into all the Medicare legislation. Same reason Medicare uses hematocrit instead of hemoglobin, even though hemoglobin is a better measure it would be just too hard to change.

OK Bill, Mr.Peckham, all medical mumbo jumbo aside, let's here what you want ESRD to stand for  ::)  just curious, thats all :P   
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Bill Peckham
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WWW
« Reply #11 on: February 28, 2007, 07:13:11 PM »

My brain is fried and I am in a bad mood because my boss  - I am trying to cover my job remotely - let me know she thinks I'm dropping the ball  .... so I'm working on Extremely Sucky       something, something   Maybe after some sleep. I have to catch a 6:45 train tomorrow.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
kitkatz
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« Reply #12 on: February 28, 2007, 09:47:55 PM »

Extremely Stupid-ass Retarded Day?

For the boss: Extremely Stupid-ass Retarded Dignitary?
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
SierraJim
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My wife is an angel.

« Reply #13 on: February 28, 2007, 10:54:57 PM »

I must admit i feel the same way about being called 'disabled' .


That reminded me of the days when I had to prove I was disabled in order to continue my Social Security Disability payments.  I still feel that one of the most degrading processes I ever went through was to prove that I was disabled in the eyes of the Social Security Administration.  I was having enough trouble with trying to survive with a spinal cord injury.  Having to prove I was disabled was an extra added horror.  I'm writing a letter to the World Health Organization, my congresspersons, and the National Institute of Health asking how to get the term ESRD changed to something more palatable.  I mean, World Kidney Day is coming up and I am heeding the call to get proactive about my Renal Insufficiency.
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Jim
angieskidney
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« Reply #14 on: March 01, 2007, 01:02:51 AM »

Its a term to describe the progression of a disease that we have, not a label.  It isn't like you wearing a pocket protector and everyone in the office designates you as the dork, or if you drive a 700 series BMW and people label you as a pretentious snob.  It will only be a label if you perceive it to be.  Does anyone have a problem with the "label" CKD?  Maybe we shouldn't call type 2 diabetes, type 2 diabetes?  Lets all label eachother as happy little people.  I mean, you are happy to be alive right?
GREAT post! I agree!  :2thumbsup; :clap;

Everyone Still Refusing to Die
I think I want to add that to my sig now!  :2thumbsup;

I hate the term ESRD which is probably no surprise since I complain about a lot of the terms routinely used in dialysis.  I would much prefer CKD5 since I think it would be very helpful to highlight the idea that kidney disease is a progression from CKD1 to CKD5.
Hmmm never thought about that but that is a very good point! People have asked me a LOT "how many stages are there" and I had to post links! ;)

I mean, World Kidney Day is coming up and I am heeding the call to get proactive about my Renal Insufficiency.
I think instead of changing terms which will only confuse the healthy people not affected by Kidney Disease, people should instead get proactive on changing the system so that Kidney Transplant recipients don't lose their medication coverage 3 yrs after their transplant forcing them back on dialysis!
« Last Edit: March 01, 2007, 01:14:19 AM by angieskidney » Logged

FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
tamara
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WOO HOO NEW KIDNEY PEEING !!!(Transplant 23/10/07)

« Reply #15 on: March 01, 2007, 04:07:09 AM »

ESRD

Everything Sucks in Relation to Dialysis      ;D
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ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine 

                                                                                                                  
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
George Jung
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« Reply #16 on: March 01, 2007, 05:31:21 AM »

Entering this
Site is
Refusing to
Die
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