NxStage Only Discussions on HDC?

Discussions for Patients, Family, and Friends HD For Patients
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As NxStage use grows, I’m wondering what the feeling is among people about the use of the Home Dialysis Central Forum for NxStage centric discussion. I know that many of us also belong to a NxStage User Only group. Although I’m a NxStage User and would be able to take advantage of the discussion, I also feel like HDC isn’t really the place. I think it’s fine if a new patient is examining alternatives, or wants to look into home modalities. I’ve always thought HDC is the better place for generic home hemo discussions. Also, if I were a non-NxStage home user, I personally would be irritated by the preponderance of NxStage Only discussion. So what’s HDC all about? Your comments please.

There are two major NxStage groups on Yahoo. I’m not going to get into the differences although I believe there are many. You decide for yourself which is the better fit for you.

NxStage_Users@yahoogroups.com, which I am one of the moderators (the Riverdude is also moderating) and ownership has been put into the hands of the group. We are fairly new and a break off of the other group

NxStageUsersGroup@yahoogroups.com, which is owned and moderated by Gus. It has been in existence since mid-2005.

NxStage Users should join one or both.

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[quote=Rich Berkowitz;14256]As NxStage use grows, I’m wondering what the feeling is among people about the use of the Home Dialysis Central Forum for NxStage centric discussion. I know that many of us also belong to a NxStage User Only group. Although I’m a NxStage User and would be able to take advantage of the discussion, I also feel like HDC isn’t really the place. I think it’s fine if a new patient is examining alternatives, or wants to look into home modalities. I’ve always thought HDC is the better place for generic home hemo discussions. Also, if I were a non-NxStage home user, I personally would be irritated by the preponderance of NxStage Only discussion. So what’s HDC all about? Your comments please.

There are two major NxStage groups on Yahoo. I’m not going to get into the differences although I believe there are many. You decide for yourself which is the better fit for you.

NxStage_Users@yahoogroups.com, which I am one of the moderators (the Riverdude is also moderating) and ownership has been put into the hands of the group. We are fairly new and a break off of the other group

NxStageUsersGroup@yahoogroups.com, which is owned and moderated by Gus. It has been in existence since mid-2005.

NxStage Users should join one or both.[/quote]

In the very first first days of Home Dialysis Central…when it was almost a Ghost Town I suggested to Dori that the messageboard needed a bit of organization. This board needed separate discussion forums for particular groups of people, but I guess Dori didn’t think it was necessaryl, at least she accepted my suggestion to use VBulletin …
that really helped against the SPAM attacks…hehehe

Still, today this website and messageboards is the central base for home dialysis regardless what machine you use, BUT still I firmly believe that this board needs organization and that has not happened yet.

Once again, I would suggest that a separate discussion area for current Nxstage users already home be made and would recommend it to keep that section private so that we Nxstage users can speak of more critical situations concerning our Nxstage experience. Also, the way everyone’s emails are kept private is crucial and I don’t believe making all members owner is safe thing, that poses a security risk. The current management at HDC is well done but a little more orgnization on the messageboards will do…

Just my 2 cents…as for NxtstageUsersGroup
will leave it up to members… its their choice…after all there are a great number of Nxstage Users who love privacy. I hope you all understand that.

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I am firmly in the “it aint broke so don’t fix it” camp. The board is not a finite space I doubt Beachy et al are irritated when the conversation swings to NxStage. They may be irritated that they don’t have the same options but the HDC board is organic, it changes over time. Right now the majority of people on home hemodialysis who are posting are on NxStage but tomorrow someone could show up with a lot to say about their Baby K or whatever. The next Pierre could be reading this right now.

I think it would be a mistake for HDC to react to a snapshot of the board. One would hope that this board will be here long after NxStage has moved beyond the System One and other options have come and gone from the market.

I am on my third brand of machine - my six year high dose anniversary is coming up - so on average a different machine every two years. I do not expect that rate of change to to change much and I intend to be dialyzing at home for … well it’s hard to type but I suppose my goal is to dialyze at home for the next twenty years. I suspect that the rate of change will increase rather than decrease - will you start new listservs each time you change machines?

The idea that we’d be better served by staying in individual silos of information does not make sense. I like the broad sweep of HDC. I like that HDC will accommodate me as I change machines. My commitment is to the modality not to the brand of machine. The modality is going to be around for a while, machines will come and go.

The privacy issue is more illusion then reality. HDC protects email addresses and accommodates people who wish to remain anonymous. If you convince yourself that somehow the listservs are private then the disappointment may be greater when the wall is breached. The main difference that I see is that the listservs are chattier, which is good - they’re serving a purpose. The other distinction that I see is on the listservs people seem more willing to write about their disappointments with the machine and/or the challenges that they face.

I think it is analogous to where one chooses to live. Some people like living in gated communities, some people like living in the city. I, for one, would be bored in a gated community which is why I live in a city. Of course people who live in gated communities come into the city all the time - just be sure to go home before dark :wink: :wink:

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[QUOTE=Gus;14257].

Just my 2 cents…as for [http://health.groups.yahoo.com/group/NxStageUsersGroup/"][B]NxtstageUsersGroup will leave it up to members… its their choice…after all there are a great number of Nxstage Users who love privacy. I hope you all understand that.[/QUOTE]

Gus, I don’t know why you insist on stating that http://http://health.groups.yahoo.com/group/NxStage_Users/ doesn’t have any privacy.

Okay, if you do a search of NxStage it does indicate it’s “publec”, but that was only for the first day before the error was detected. Yahoo didn’t correct it and I guss you believe everything you read. We now have many more members and group membership requires approval, just like yours. In fact, in the past seven days, our messages have nearly doubled yours.

And if you remember correctly, if a couple of us weren’t banned by you, a second group wouldn’t have been necessary. Quite frankly, people would not have had to make a choice if it wasn’t for your own actions in the first place.

I don’t really want to bring up any of the dirt, but if I did, it would be your face that got muddy! So please do not imply our group isn’t private! You’re just shooting from the hip!

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[quote=Rich Berkowitz;14331]Gus, I don’t know why you insist on stating that http://http://health.groups.yahoo.com/group/NxStage_Users/ doesn’t have any privacy.

Okay, if you do a search of NxStage it does indicate it’s “publec”, but that was only for the first day before the error was detected. Yahoo didn’t correct it and I guss you believe everything you read. We now have many more members and group membership requires approval, just like yours. In fact, in the past seven days, our messages have nearly doubled yours.

And if you remember correctly, if a couple of us weren’t banned by you, a second group wouldn’t have been necessary. Quite frankly, people would not have had to make a choice if it wasn’t for your own actions in the first place.

I don’t really want to bring up any of the dirt, but if I did, it would be your face that got muddy! So please do not imply our group isn’t private! You’re just shooting from the hip![/quote]

You asked for it BUT, for all of you reading this please disreagrd it…Rich has been having personal problems for long now, something he has had with me for awhile now…he’s been sending me personal emails demanding things that were not appropiate to the group I manage at [B]NXSTAGE USERS GROUP[/B]…

All accusations by Rich are all false…he’s been trying to take admin access of the group I manage and at the same time providing documents that Nxstage did not authorize…I immediately deleted those documents off the group, but he continued provacation and I had no choice but to remove him off the group…

As you can see here, he still wants to flame me…

The real and only listserve and orignal to its roots is for Nxstage Users is [B]Nxstage Users Group

If Dori is reading this, I’d suggest this thread locked…
[/B]

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I think it is analogous to where one chooses to live. Some people like living in gated communities, some people like living in the city. I, for one, would be bored in a gated community which is why I live in a city. Of course people who live in gated communities come into the city all the time - just be sure to go home before dark :wink: ;)[/quote]

Amen, Brother Bill.

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Gus and Rich,

I suggest you boys take this off the public playground. Your personal attacks no matter how erroneous some maybe are no fun to read and detract from the goal of Home Dialysis Central Forums.

We have two groups because of your actions Gus. For better or worse we now have choices. Both groups maintain a very small share of the Nx Stage User universe. But, for those who are members they are serving a valuable purpose - or they wouldn’t exist.

Erich

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[quote=TheRiverdude;14334]Gus and Rich,

I suggest you boys take this off the public playground. [/quote]

I agree Erich. I have to say I’m always surprised when dialyzors get into a pissing contest.

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Hey, y’all. We find that even with our very simple 2x2 matrix of message boards (patient (dialyzor)/professional and PD/HD), we still have folks getting confused and posting to the wrong place. On sites I’ve seen where there’s a different board for each topic, it quickly gets very confusing and frustrating to have to check 27 different places to find what you want. So, we have no immediate plans to separate out NxStage–or any of the new machines coming down the pipeline–into different boards. Here on Home Dialysis Central, it’s about the modality, not the machine.

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Erich, thanks, I needed that reminder to stay on the high road. I perhaps fell off of the road in a couple of posts. That’s not typically like me. I guess I got my dander raised. To the group, please accept my sincerest apologies. I won’t respond to the last post attacking me – although part of my nature is to not let it go. I will just consider the source and let it slide. Besides, any reasonable person could read both the lines and between the lines.

Erich, we have developed a good friendship. It started because of our common interests in home dialysis and NxStage. It was developed into a real caring about each other’s condition and life. That is what all of our relationships should be, especially since we share being on dialysis with each other.

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Hello Dori, your doing a marvelous job as owner and moderator and my suggestions are just that. In the past I remember how awful it was when your board was getting so much SPAM attacks and I tried assisting in alerting you but it just was so bad that other steps had to be taken, so I suggested [B]VBulletin[/B], and I can now see how much you’ve rested from NOT seeing anymore SPAM attacks. The updated design and content had really spruced up the cause and I applaud the BIG effort done by your management team. This is your board and all your decisions of how you want it is what I and most of us praise and we do respect your decisions. Sometimes some people may go to extreme to criticise of how you run your site and you’ve done fantasitc on mainating firm and strong. Sometimes I wonder how would you feel that you gave us all most active members Moderator/Admin status? You’d probably assume its not a good idea…

Anway, your doing a magnificent job already and the contribution to us the dialysis community is immense that you won’t imagine how much we’re benefiting from your work.

Disregard the problems Rich and I are having… it has nothing to do with HDC …

Once again I applaud your great work here…

[LEFT]The One and Only,
Gus
[/LEFT]

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Hey Rich!

As part of the international brigade that views this site regularly (sure there are also many who lurk but don’t post) I do feel somewhat insulted by your partisanship.

Dialysis is more than just the brand of machine you use, mate! There is the continually evolving diet, lifestyle, needling, social, physical and modality issues as well as you are no doubt aware.Not to mention the fear of starting home dialysis. I and many others read all posts with interest and think we all have something to contribute to make everyones lives happier.

I wouldn’t normally say this,and pardon me, but maybe you are being a bit egocentric about Nxstage. How about thinking about some people in less economically developed countries, such as India, who don’t even have the choice of home dialysis and what machine they can use or even whether they will get dialysis. If you don’t want foreigners to read these posts then it shouldn’t be even on the internet.

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Rich
On re reading your first post maybe I was a little bit hotheaded. Were you just playing the devil’s advocate to engage in a discussion or trying to promote your own website?

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Hey Matey, I didn’t mean to offend anybody not using NxStage. In fact, if you were able to visit our site, but can’t because it’s limited to NxStagers Only, you’d understand about the level of discussions we have regarding our particular brand. It’s at a much higher level and much has to do with our daily experiences with the particular brand, problems pts are having, discussions about the particular company and its therapy. If you could only see!..We also state in our introduction that HDC is the place for more generic home dialysis discussion.
So I’m not trying to be a partisan, or an elitist. We have a very active membership, which most also belong here. I know you’re interested in NxStage and have often said you wished it was available Downunder, but I certainly didn’t mean to insult. I’m only speaking personally now, but if there was as much Fresenius Only discussion on the forum instead of it being NxStage that I would certainly be irritated. I agree with your statement:

“Dialysis is more than just the brand of machine you use, mate! There is the continually evolving diet, lifestyle, needling, social, physical and modality issues as well as you are no doubt aware.Not to mention the fear of starting home dialysis. I and many others read all posts with interest and think we all have something to contribute to make everyones lives happier.”

And I think that’s what the discussions on HDC should be about, and not one particular brand. So I hope you can see I was actually try to be a non-partisan, and putting the NxStage centric discussion where I thought it belonged. I’m not always right, but I do have firm beliefs. I can be convinced with logical arguments that I am wrong, and am not set in my ways not to change. I do try to be reasonable. But I also think you wouldn’t be interested in reading the hundreds of posts regarding the 170 cartridge that NxStage introduced a couple of months ago and all of the problems people have had. Nor would our members want to post their complaints on a public forum. So please try to underdstand my position.

Trying to promote my site. If I was then I wouldn’t have put Gus’s address down too. And if you notice, I don’t have it in my signature at the bottom of each of my posts as well. People are finding us in other ways.

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Hi Rich
Points taken. Now I only wish i was allowed on those elitist Nxstage sites… (;
Cheers

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[quote=beachy;14369]Hi Rich
Points taken. Now I only wish i was allowed on those elitist Nxstage sites… (;
Cheers[/quote]

Be our special guest! Maybe you’ll learn something from us that you can share with others in Oz? If so, just head on to [B]NxstageUsersGroup [/B]
and register and just say out loud “Its Beechy!!” …your very welcomed…

Cheers,
Gus