I’m new to participating in renal related message boards since my RN has been insisted I start since she thinks I’m so outspoken. However, I am now noticing that there’s a bunch of different boards. I’m a NxStage user and am wondering which board is best for NxStage specific issues. I don’e want to put anybody “out of business”, but would kinds like to find one primary gathering spot for NxStage users to share information. Am I wrong in trying to do this?
It appears that nobody posts on just one board. Each has its own advantages. I know what you are saying, but I think most of these boards serve a purpose.
[quote=Rich Berkowitz;13164]I’m new to participating in renal related message boards since my RN has been insisted I start since she thinks I’m so outspoken. However, I am now noticing that there’s a bunch of different boards. I’m a NxStage user and am wondering which board is best for NxStage specific issues. I don’e want to put anybody “out of business”, but would kinds like to find one primary gathering spot for NxStage users to share information. Am I wrong in trying to do this?
Rich, you could be right. I don’t want to spam my site here, but it is for anyone who has an interest as a caregiver or as a patient. I see a lot of lurkers that keep returning, so I assume they find information they find useful and that is why they keep returning.
The name probably fools some people, as you said, though. I think, as a caregiver, I feel like an intruder on certain sites. Here at this site, I haven’t had that feeling. This site is designed for patients and professionals, but I have never felt like I was out of place here as a caregiver. I hope to be able to have that same “feel” at mine.
I don’t think anybody is going to just visit one site. There are many good sites out here. Each has its own “feel” and its own niche. I check here and my site while Denise and I are doing her treatment. Gives me a couple of hours 6 times a week to keep up with the latest on everything.
I like this site v. yahoo groups because I prefer the public discussions. I also prefer the navigation on boards to navigation through the egroup set-up. I also like the soft touch/self-moderating dynamic on this board and what moderation there is, that moderation is transparent.
I think another way different boards distinguish themselves is by the range of their subject matter. If the discussion focus is dialysis in general then NxSatge discussions can get lost on a big board. If the discussion focus is just NxStage then it feels too limited. We are in this for the long haul and I hope we all live to try new machines.
Home dialysis feels “just right”. I like the idea that as I move from one machine to the next I can stay in touch with a group of people that know my history, and are like minded in the sense that we’re willing to take on the challenge of providing dialysis outside the in-center standard. I am also in favor of allowing anonymous posts, as I’ve said, and this site is one of the few left that really allow easy access. I think a thoughtful spirit of collaboration is apparent here and the open access makes it feel welcoming.
I guess the one divisive element of HDC is that it enforces the Pakistan/India like divide between PD and Hemo.
I like this site v. yahoo groups because I prefer the public discussions. I also prefer the navigation on boards to navigation through the egroup set-up. I also like the soft touch/self-moderating dynamic on this board and what moderation there is, that moderation is transparent.
I think another way different boards distinguish themselves is by the range of their subject matter. If the discussion focus is dialysis in general then NxStage discussions can get lost on a big board. If the discussion focus is just NxStage then it feels too limited. We are in this for the long haul and I hope we all live to try new machines.
Home dialysis feels “just right”. I like the idea that as I move from one machine to the next I can stay in touch with a group of people that know my history, and are like minded in the sense that we’re willing to take on the challenge of providing dialysis outside the in-center standard. I am also in favor of allowing anonymous posts, as I’ve said, and this site is one of the few left that really allow easy access. I think a thoughtful spirit of collaboration is apparent here and the open access makes it feel welcoming.
I guess the one divisive element of HDC is that it enforces the Pakistan/India like divide between PD and Hemo.
Well, it seems like I’ll have to check out a few and see what works. It just that I don’t want to spend my life running around different boards – I’d like to think I’m living for more than just dialysis. It’s bad enough I’ve got to do it six times per week. And even though my short daily dialysis takes 2½ hours, but really 3½ considering setup and coming off, I’d like to think I have other interests as well. One of my old sayings was “whether one is working to live or living to work” or vice versa. So the next question is are we “dialyzing to live or living to dialyze”? And to be quite frank, sometimes the answer get blurry.
I’ve tried to maintain as positive an attitude as possible – I even asked to go on dialysis before I was absolutely forced to. And I’ve done a pretty darn god job of it, but I also sure we all have some low moments – I know that I have.
Getting back to the question of NxStage discussions, I would just like it if some NxStage people would get involved somewhere so there would be a direct pipeline to the company about patient concerns. I know that the tech support people are absolutely great and have been receptive to my thoughts, but sometimes wonder if anything is really getting passed up and having any effect. Add because I also know some of my requests have fallen on deaf ears that I thinkl users have to get together. Without sounding political, there is truth to the fact that unionized workers did gain a great deal when they spoke as a larger more powerful combined voice as opposed to individuals. .
Getting back to the question of NxStage discussions, I would just like it if some NxStage people would get involved somewhere so there would be a direct pipeline to the company about patient concerns. I know that the tech support people are absolutely great and have been receptive to my thoughts, but sometimes wonder if anything is really getting passed up and having any effect. Add because I also know some of my requests have fallen on deaf ears that I thinkl users have to get together. Without sounding political, there is truth to the fact that unionized workers did gain a great deal when they spoke as a larger more powerful combined voice as opposed to individuals. .
Rich Berkowitz
NxStage 2/06
In Center 3/03[/quote]
That’s what “NxStage Users Group” is all about…we get together and discuss and share concerns about NxStage System One and if possible we send out feedback to NxStage. The beauty of this group is that we really feel like family, we really know who is who.
I can see your point on this–and we actually view all of the treatment options as complementary, not adversarial in any way. The only reason that we separated them out was to make it easier for folks to find PD vs. HD related topics more easily, and so when questions are posted, it’s clear which treatment is involved. I’ve seen some instances where folks are talking about catheters, for example, and the PD folks will have one answer, and HD folks will have another, and everyone assumes that the question was meant for them. So, we’re trying to reduce confusion.
It was just an idle thought I was trying for balance.
However, it did occur to me that in the scheme of things Hemo is more like Hinduism with it’s multigod manifestations of the singular truth. The truth being: more dialysis is better; the machines would be the various alters at which we seek this truth.
PD with its multiple exchanges would seem to have much in common with Islam’s call to prayer five times a day.
There are only so many hours in the day. And there are may other issues to keep track of and non-renal communities to connect with online not to mention life in meat-space. It is easy to get very involved with online communities and often involvement ebbs and flows with the years.
Sure. For low moments there is nothing better than the internet to feel like you are not going through this alone. Even the most involved loved one will be hard pressed to understand as clearly as people in your shoes. If you’ve successfully faced the challenge then sharing your story will help others who might see themselves in your tale. How you share your story is up to you but hang around long enough and eventually we’ll get to know your story.
I’ve suggested a Dialyzor Union but not to interact with manufacturers, rather to advocate with the large dialysis organizations and CMS. My impression is that the System One is as advertised so I am not sure what obligation they have to make any change. Of course as they develop their product they are sure to make changes subject to their cost/benefit analysis but I am not sure what standing any group of dialyzors would have to be able to compel changes.
That’s how most medical manufacturers operate. Nxstage operates in a whole new level. They want to hear the voice of their clients. They want feedback. They want to be connected to the people they serve.
Remember the quote “We want a deaf president” ? ( http://pr.gallaudet.edu/dpn/ ) …its an example… it’s us that makes them who they are.