This Is A Free Site And Some Of The Issues Here Are Not In Concern Of You . I Find Removing Of Information Rude Are You Afraid Of Somthing??
Here it is 2007 and yet people still post poorly spelled, ungrammatical, anonymous, off-topic posts and then wonder why their two cents are not appreciated. This message board is providing a very useful resource to a growing number of individuals that use home dialysis to replace their renal function. There are a number of boards in the renal online community that offer the opportunity to chat, socialize and spout off about any and all topics but this is not one of them. I am not certain but I think Shay, Angie or Billable’s site would host a thread on the hypocrisy of twenty-first century America or you could start your own blog. But stop being surprised when some basic standards are enforced.
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Here are the Bulliten Board rules, reposted from the front page of this board:
http://forums.homedialysis.org/showthread.php?t=1
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Home Dialysis Central is a one-stop resource for patients and professionals who want to learn more about home dialysis options–what they are, where you can find them, and why you might want to choose one.
You’ll find descriptions of five types of home dialysis, centers that offer home options, pending laws that affect home treatments, research, links, professional resources, and more.[/B]
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I see alot of people who visit here just don’t get it what this website and forum is presenting. They think they can come here and write on it as if it were a graffitti wall…free for all.
On the other hand, I think this is the leading website about home dialysis and any other forum or website trying to present what is presented here falls as a sub-category. These forums are only about home dialysis nothing more.
Bill, what you posted as a reminder is something I think non-of the unregistered users take their time to read.
To unregistered - can you cite an example of what you refer to? Your statement was totally arbitrary. There are two sides to every story - I’d like to hear your complaint. Then perhaps Dori, who has committed more time and energy to educating people than I suspect you ever have, can provide another insight. And please clean up your grammer; this is an educated group.
Thanks, Jerseygirl, but I’m afraid that “unregistered” is the only person we have ever had to ban from Home DIalysis Central since we started the site in July, 2004. He objected to our closing the “smoking pot on dialysis” thread after it finally deteriorated into off-topic political discussions, and then started a second thread on the same topic, which we deleted. He was also frequently posting messages as unregistered with various names (yes, we can tell when it’s the same person) and then replying to himself, which he was told was unacceptable behavior–and then he did it again. He had also previously received a warning for swearing.
Nobody who respectfully asks for or shares information or offers their opinion about home dialysis has to worry about this happening to them.
This is none of my business and I won’t be offended if you ignore it or even delete it, but I am very curious. Why do you allow unregistered persons to post?
That’s actually a good question, Billable, because Lord knows that doing so has caused its share of problems (nearly all before we upgraded our message board software and eliminated spam). But our feeling has always been that some people–for whatever reason–don’t feel comfortable posting if they have to register for a site. Sometimes people live in areas where there isn’t home dialysis, for example, maybe even where there’s only one center in town, and they don’t want the whole Internet (and their care providers) to know that they’re looking for other options. We would much rather know less about people and allow them to post as unregistered until they get comfortable (if that ever happens).
Folks here offer each other support and information, and we chime in to either offer information or find someone who can answer questions. This isn’t just a social site where everyone needs to know who everyone else is. Some people just come to get one question answered and then they leave. Others stick around and become part of the community. At any rate, we’ve only had to ban one person, so it’s mostly worked out okay. We just don’t like to put barriers between people and the information they need.
Well I guess I,m Hated here, I was just trying to help with questions I come across in the previous years in HD. I really can care less if you don’t like my post’s or spelling, I was under the impression this was a free site. I have a lot of experience ,done a lot of speaking about various issues about H.D. I did not like the fact that they Shahtell just locked the thread when people were still posting. I wounder if she has a loved one on H.D, I do so I care a lot about spreading the word about anything that helps H.D patients. There are some of you who know me personally. I’m a activist about H.D I have been to and volunteered at the EXPO NKC and that was one of the best experiences ever. I do have a problem with this single person not with the site as a whole. I did not register do to the fact they can look up my info I believe its a violation of HIPA. I will never post on this site again I will be starting my own site with freedom. Just because this topic was about pot it was a problem. See how they will use your profile or other stuff with your info against you. I will warn others about this. Good Bye all take care and remember keep that kt/v up!!!
I’m afraid it doesn’t count as “people were still posting” when one person posts over and over, pretending to be different people.
I do have a problem with this single person not with the site as a whole. I did not register do to the fact they can look up my info I believe its a violation of HIPA.
No information that anyone provides themselves voluntarily can ever be a violation of HIPAA.
What ever your so smart I guess I posted all of the post from what you say. your a lier!!! and on that note I will waste no more time on your immaturity . You have way to much time on your hands I dont .I have a life my ip address is none of your concern since it changes rapidlly there are programs for that. if you enter into my computer via ip or any other way i will file suit with this site and you since i have your name ,it was pretty easy to look you up. leave me alone. I have been tracking intruders on my pc and so far your ok. Is this part of home dialysis central is to argue with people. ?Talk about off topic follow your own rules.
The Kidney Expo! have you seen this thread?
http://forums.homedialysis.org/showthread.php?t=387
Funny that you should mention the Expo (which I think will be either October 20th or 27th this year) did you see Dori at either the first or second Expo? Medical Education Institute was the first exhibitor to sign up for the first Expo. I was the one who made the phone calls, cold calls to potential exhibitors that first year.
Let me tell you, calling businesses and asking them to exhibit at a first time event is unpleasant. In fact cold calling has a prominent place on my personal list of things I dread. Not only was it a first time event it was an event that a reasonable person might think would be poorly attended. One could have been forgiven thinking that we’d be lucky to get a couple hundred people to show up. So there I was, a phone list of 200+ renal related and non-profit or health related business contacts in my hand, staring at the phone, tasting a faint whiff of bile. I’m trying to psych myself up - I can do this. It’s going to work. But I kept hearing the doubts. I made my first call - to Dori.
Dori said yes. She said yes when it was just an idea even though it would mean coming to Seattle from Wisconsin. Schlepping her booth and then staffing the booth during the event. And what does Dori sell at the Expo? She tries to sell people with kidney disease on the idea that knowledge is power (which happens to be the Expo’s tag line). She tries to get people to take advantage of the free resources offered by MEI: KidneySchool; Life Options; and Home Dialysis Central. I don’t know what I would have done if Dori had said no but because she said yes I was able to suck it up and keep making calls. If you like the Expo you should thank Dori for being it’s first paying supporter.
Hate? No even knows you. You haven’t let us get to know you. You don’t have to officially register just pick a nickname and consistently use it. It is not a personal attack to point out that you were off topic. I support access for people who choose to not register, for whatever reason, or no reason. My observation is that it is often people who are new to the internet or at least internet discussion forums, who feel least comfortable registering. These are also often people who most need to ask a`question. So I applaud Dori for allowing anonymous posts. Off topic, is off topic. I could think of ways of tying the discussion to home hemo - adult autonomy: my belief in supporting selfdialysis/solo dialysis goes hand in hand with my belief that the State should not police victimless crimes.
Post or don’t post but it is ridiculous to make Dori out to be the bad guy in this kerfuffle. I know Dori, I’ve ridden roller coasters with Dori. Dori is a very nice person. This is a forum for discussing home dialysis and the concerns of those on or those supporting those who are on home dialysis.
Often grammar/spelling are options in cyber-space but you should understand that ones writing ability is like ones dress in meat-space: it is your appearance, it is how you are first judged. Now it is true that one should try to get past careless sentence structure and unfortunate word choice just as one should try to get past raggedy dress and unfortunate hair choices but off topic is off topic.
“Crap” is all I can say right now ,I have probably met her I helped run the home hemo booth, B Braun My Fiance and I 2005. With Jean I don’t know how I made so many people mad I just kind of get upset when I feel attacked for topics that really have some real meaning you have been downstairs s.c.u its rough and I dealt with a lot down there. I was asked lots of questions by Pts I could not answer but being from Seattle I used to be pretty laid back. Here in Fl its crazy its like a buffet of Doctors and Nephs its scary for me to see what could of happened if me and my Hun didn’t get together. I have gone thought 1 home program here .I dumped them pulled my fiance out after repeated equipment failer water quality was crap sometimes I was told to do shady thing , I told them were to put it of course. So I have now found a superb company that runs a little like NKC home program. Most of all its safe and state of the art. We are on the new baby k with the aqua boss r.os all brand new and they really do the job. Very quiet alarms are minimal her kt/v is 3.0 and creatinine of 3.3 almost like the real thing. 4 TX 10 hours 300 QB 400 dfr . Well we all put our foot in our mouths once in a while. I do love the fact that SHAHTELL has done a lot for home hemo and self care. I also like to thank you for what you have done over the years.
Thats so incredible I realized during the first Expo alot more people then I expected showed my voice hurt by the end of the day. I loved it thought I hope its even bigger next year. By any chance did you do the demonstration on the nx stage??
It’s all good. Communicating, interacting through the computer is a new skill. Dori and I are old hands.
What motivates me to advocate nationally is knowing that the level of care varies greatly among providers and locations. I use to not like visiting a friend in FL because my in-center experiences in his area were depressing. Now with the NxStage its not an issue. Last November I was dialyzing by his pool.
I am a NKC partisan but I truly believe it is a wonderful system of care imagined into existence by Scribner, Haviland and the rest of that generation. Those guys really thought it through and were thinking of others not themselves. That spirit is alive and well. You know in October NKC’s Trustee Board Chair will be someone who is on dialysis - how’s that for patient centered.
I remember when Schribner Past I was working at NKC It was sad. I had the chance to see a lot of the old videos of the old committee hearings who would tell you if you were able to dialyze or not very scary for the people of those times. I also know on of the original Dialysis techs from Eckland hall the first of Schribners units next to Swedish not in front like today. He told me a lot of stories about the pioneer stages of HD and PD.
I do apologize for some of the thing that happened here I guess living here in Florida has put me on the defensive. Good for you to Dialyze by the pool the units here are mostly private and cash is a priority. Home Hemo hopefully will take off soon.
Hey! I live in Florida!! :D…
Bill, thanks for the insight. I hadn’t thought of registration as a barrier to users getting information. I guess some people don’t understand what actually is happening when you register and you tend to fear what you don’t understand.
My husband and I were in Seattle for a wedding of a high school buddy of his when Dr. Scribner died. I was right there and so wanted to stay for the funeral, even though I’d never had the chance to meet him in life. My husband couldn’t quite understand why I was so sad about someone I’d never even met. I told him, “plenty of people never met John Kennedy, but they still felt a loss when he died.” We’d written a proposal to PBS to try to do a documentary of the history of dialysis that would have included some of the luminaries like Dr. Scribner and Dr. Kolff–before they passed away. Unfortunately, it wasn’t funded. But one of the great regrets in my life was never getting to meet Scrib.
Do you think giving another try to PBS they might consider? Perhaps some outside funding may help. Perhaps starting a fund drive on this website in the purpose of a documentary to tribute Dr. Scribner …or maybe you can do the documentary?
In Seattle there is a museum hosted by North West Kidney I believe they have a good inventory of old machines pictures. Dr. Scriebner had started this museum in North Gate Seattle sub. That could be a good place to start since I imagine there is some kind of sponsorship.