Home Dialyzors United

[boswife]

for those of you 'new' to NxStage , and  now any form of 'home' dialysis, i want to share with you an amazing place to go for support.  w/o them, i would have been lost and theres so much more to learn about these forms of D than you learn in training,  the people are increadable helpers, with  lots of different levals of experience.  It's WONDERFUL!  If you go to this page  http://homedialyzorsunited.org/  and then go to *members* (You must either be ON a home D or training for to get on this part of the board) you can join the listserve and im telling ya, it's very nice and helpful when your going through the new stuff, or even experiened.  I think it's best to set up on a gmail acct as it groups things nicly.  Theres amazing stuff just on the board as well..  Give it a shot ... And good luck to all those just starting... I know 'one' for tomorrow and sending best to all... 

[MooseMom]

Wait a minute...why do you have to either be in training or already on home D to be able to access the boards?  That doesn't make sense.  How about all of the newly diagnosed ESRD patients who are trying to get information on home D to see if it might suit them?  Are you sure about this?  I mean, I'm not on D yet, but does that mean I can't become a member?

[boswife]

oops.... sorry!!  what it is is a really great site for info  AND  Then, there is 'also' a listserve for those already doing the D at home.  And actually, i remember being very discouraged that i couldnt join the listserve part until training.  I wanted to learn AHEAD of what i was in for and ya know, i dont even know how/why it is that way....  I am going to go ask right now 

[MooseMom]

I'm not really sure what a "list serve" is!  LOL!  How is it different from just a regular message board?  OK, so I'm technologically challenged...

Oh wait...I think I see.  You have to pay a membership fee to have access to listserve, is that right?  Isn't that a new fee?  I was a member on the old board but I haven't been there in a long time, but I see now there is a fee.  Well, that's fair enough. 

[boswife]

ohhhh, i dont think so,,, i think Paid membership is still an option... I may have guided you to the wong section...  lol     im gonna go back and check out site and come back with proper info...  And .. i dont understand listserves really, i just use it..It's been increadable resource for me... i'll be back with better stuff...

[boswife]

Ok, answers (they answered right away, i am just getting to it )  So, there is NO membership *required* as far as dues.  The listserve and upcoming new site is free and im telling ya, its great!!  Then, if ya love it there and all, you are offered membership as they have webnars and other benifits of being a 'member'  There are some upcomming ones that im surly hoping to get in on..

This is the answer as to why "listserv is for those in training, or using nxStage or other home d.....) 
"Good question.  When the Listserv was very young there were some people that wanted the listserv open only to actual NxStage dialyzors and care partners.  A discussion took place with people favoring both to keep it open to all and others the opposite.  The others prevailed.  The reason was that many of the discussions were critical of both NxStage and clinics.  In those days NxStage wasn’t as stable with the cycler, cartridges and later PureFlow.  Because of the many problems and complaints, many people were concerned about retaliation from the company (I never thought that would happen, but others were concerned).  There also was concern about similar retaliation form a clinic if somebody vented about them."

Hope that helps some... what is great is you can still get and share information freely on the site and your questions will be answered there.  But the listserve is strait to you and fast..  Can someone explain listservs..  

[MooseMom]

Thanks for that, boswife.

Don't worry about the listserv.  Once I am in a situation where I need it, I will investigate it and pay the membership fee.  If you say that it is worth it, then I trust your judgment.  I guess that right at the moment since I am not on D yet, I don't want to overload myself with information that I don't yet need.  I have a real problem with overthinking things (as you know!), so I need to be a bit more disciplined in that regard.  LOL!

[boswife]

Ya know MM, when i just started over there, i was kind of bummed cause i couldnt get on the listserve right away and almost lost interest. (the new site is going to be awsome)   Again, this is all free, w/ paid membership as an option w/bennifets..  Great people,( some from here), and tons of info. Sooo, when/if it comes time to do the listserv, you can learn that then..lol   I tell ya, i learned soooooooooo much about how to 'tinker' with machine to make it work better 'for' Bo, Of course, i always put it through to our 'center' and they're amazed at the ability to do these things ya learn there.lol  And YES, i do know you and you will be very happy with it  
I do hope some of you newbies to NxStage go check it out ..  it's a real soul settler talking to others who have 'been there'..

[amanda100wilson]

Paying for membership is encouraged (anyone can use the Forum) to help pay for webinars, the annual conference (which I went ot last year just before I started my NxStage training) which is well worth attending, and a great opportunity to meet some amazing people.