I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: SierraJim on February 28, 2007, 12:49:21 AM

Title: End Stage Kidney Disease (ESRD)
Post by: SierraJim 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
Title: Re: End Stage Kidney Disease (ESRD)
Post by: angieskidney 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
Title: Re: End Stage Kidney Disease (ESRD)
Post by: SierraJim 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
Title: Re: End Stage Kidney Disease (ESRD)
Post by: AlasdairUK 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?
Title: Re: End Stage Kidney Disease (ESRD)
Post by: KICKSTART on February 28, 2007, 05:07:19 AM
I must admit i feel the same way about being called 'disabled' .
Title: Re: End Stage Kidney Disease (ESRD)
Post by: George Jung 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?
Title: Re: End Stage Kidney Disease (ESRD)
Post by: goofynina 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?  ::)
Title: Re: End Stage Kidney Disease (ESRD)
Post by: jbeany 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

Title: Re: End Stage Kidney Disease (ESRD)
Post by: goofynina 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;
Title: Re: End Stage Kidney Disease (ESRD)
Post by: Bill Peckham 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.
Title: Re: End Stage Kidney Disease (ESRD)
Post by: goofynina 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   
Title: Re: End Stage Kidney Disease (ESRD)
Post by: Bill Peckham 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.
Title: Re: End Stage Kidney Disease (ESRD)
Post by: kitkatz on February 28, 2007, 09:47:55 PM
Extremely Stupid-ass Retarded Day?

For the boss: Extremely Stupid-ass Retarded Dignitary?
Title: Re: End Stage Kidney Disease (ESRD)
Post by: SierraJim 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.
Title: Re: End Stage Kidney Disease (ESRD)
Post by: angieskidney 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!
Title: Re: End Stage Kidney Disease (ESRD)
Post by: tamara on March 01, 2007, 04:07:09 AM
ESRD

Everything Sucks in Relation to Dialysis      ;D
Title: Re: End Stage Kidney Disease (ESRD)
Post by: George Jung on March 01, 2007, 05:31:21 AM
Entering this
Site is
Refusing to
Die