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Author Topic: What is needed in a site?  (Read 2369 times)
angieskidney
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« on: July 10, 2006, 11:17:20 PM »

Okay I hope this is a good place for this.

I am from D&T City and as you can see in that link, I decided to rant and I don't know if I will get slack for it but I thought I would bring what is on my mind here.

What is on my mind? Well, if I am a member in a forum that is run by nurses and I am a patient who doesn't agree with things they say, does that make me wrong or them? I think everyone is entitled to their opinion and D&T City are great people who never stop you from speaking your mind. Then what is the problem? Well if you look at that link you will read something that upset me.

What upset me? Well go and read. My post is long but read the post before mine and I am sure you will be angered too. It is only an opinion however and anyone is free to speak freely. Then why did it upset me? Because it was an assumption about all people on dialysis!!

So it brought me to ask this question, and finally get to the point of my post here:

What is really needed in a site that would benefit BOTH patients AND medical staff??

Is it possible to have a site / forums that BOTH patients and staff can get along and share the space?

What do you think are important points that every good site dealing with dialysis and renal disease should have?

Do you think that if medical staff on a site is posting their opinions that it would chase anyway patients that might be interested in becoming a member?

Do you think patients can ever agree completely on their care with medical staff?

Do you think that most medical staff have their own preconceived notions that lead them to act they way they do toward patients?

Do you think that if medical staff want to make a difference and thus make a site for that purpose might lose focus on what a patient might want to see?

Sure D&T City might not stop you from speaking your mind but sometimes I just feel not listened to and feel like if I supported live donation that they would all come down hard on me. I know it is temporary but does that make us bad people because we want a kidney? I DO care where I get a kidney from and NO I do NOT want to put someone else's health at risk just to make mine easier.

I am sorry if this is a bad place for this rant but I wasn't sure where I should put this. Also I hope no one would get mad about this as I am just a patient and am NOT bad mouthing D&T City. They are great. But in all honestly ... IHateDialysis.com fulfills more patients needs and D&T City is better for dialysis medical staff's needs.

Please tell me anyone if you disagree. And Epoman if you want to change anything in my post please email me what things were changed and why, thanks. I appreciate it.

- Angie
« Last Edit: July 10, 2006, 11:40:33 PM by angieskidney » Logged

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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)
Epoman
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« Reply #1 on: July 11, 2006, 06:38:42 PM »

What is needed in a site? You're looking at it baby.  >:D Something big is happening next month that will make this site more noticed and answer some of your questions.

This site is here for you to speak you mind FIRST, and if a member of the medical profession comes a learns a thing or two about how patients are people to, then so be it.

As to one of your questions, NO I don't think patients and staff will ever come to an agreement on our care, since the staff can not relate to us. They may feel sorry for us, but they will NEVER truly understand. And doctors (well most) are the biggest ones to forget that we are people just like them, only sicker.

Also I NEVER change/edit a members post unless there is unreadable text, such as the one post you made about "Skype" I erased all the different languages it comes in since, a lot of the text will not appear on most computers. You do not have to worry my mods are instructed to move, lock, and moderate posts but never to edit them unless they are fixing a html tag error that the poster did, and when they do edit a post, they must say it and the reason for the edit in the original post.

As to is this the right section? Well I guess, the only thing is I like to keep ALL dialysis talk out of this section. After all this is Off-Topic.  ;)

Oh and by the way:
Quote
What upset me? Well go and read. My post is long but read the post before mine and I am sure you will be angered too. It is only an opinion however and anyone is free to speak freely. Then why did it upset me? Because it was an assumption about all people on dialysis

LINK?
« Last Edit: July 11, 2006, 06:40:16 PM by Epoman » Logged

- Epoman
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13+ Years In-Center Hemo-Dialysis. (NO Transplant)
Current NxStage & PureFlow User.

Please help us advertise, post our link to other dialysis message boards. You
angieskidney
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« Reply #2 on: July 11, 2006, 06:46:29 PM »

As to is this the right section? Well I guess, the only thing is I like to keep ALL dialysis talk out of this section. After all this is Off-Topic.  ;)

Oh and by the way:
Quote
What upset me? Well go and read. My post is long but read the post before mine and I am sure you will be angered too. It is only an opinion however and anyone is free to speak freely. Then why did it upset me? Because it was an assumption about all people on dialysis

LINK?
http://groups.msn.com/DialysisTransplantCity/general.msnw?action=get_message&mview=0&ID_Message=5692&all_topics=0


You will have to move this to the right section then (I don't mind) because I have no idea where rants about kidney sites should do since it is not a rant about dialysis. Maybe a new section is in order? I really don't know. That is why I put it in offtopic.
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)
Epoman
Administrator/Owner
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Gender: Male
Posts: 3368


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« Reply #3 on: July 11, 2006, 06:50:45 PM »

As to is this the right section? Well I guess, the only thing is I like to keep ALL dialysis talk out of this section. After all this is Off-Topic.  ;)

Oh and by the way:
Quote
What upset me? Well go and read. My post is long but read the post before mine and I am sure you will be angered too. It is only an opinion however and anyone is free to speak freely. Then why did it upset me? Because it was an assumption about all people on dialysis

LINK?
http://groups.msn.com/DialysisTransplantCity/general.msnw?action=get_message&mview=0&ID_Message=5692&all_topics=0


You will have to move this to the right section then (I don't mind) because I have no idea where rants about kidney sites should do since it is not a rant about dialysis. Maybe a new section is in order? I really don't know. That is why I put it in offtopic.

No it's fine where it is  :) No problem.
Logged

- Epoman
Owner/Administrator
13+ Years In-Center Hemo-Dialysis. (NO Transplant)
Current NxStage & PureFlow User.

Please help us advertise, post our link to other dialysis message boards. You
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