A suggestion about 'nocturnal' dialysis and its misleading meaning

[Bruno]

It's nearly a year since I found this site and, like many other members, I've looked around and so can confidently assert it is easily the best in the world at what it does. That doesn't mean, of course, that it is or should be immune from criticism.

Some issues I'd like to raise and bear in mind I'm from Sydney, Australia so my comments reflect your growing international contingent:

1) This forum is supposed to be about 'nocturnal' dialysis but in reality it included at least 3 separate threads ...

Nocturnal meaning a daytime session taken at night, usually 3 days per week, often only of 5 hours. Always in a centre, with a nurse or technician setting up.

 Nocturnal meaning a nightime session wherein the patient sleeps (or attempts to) and is often on dialysis for up to 8 hours for several days each week. Always at home with the patient setting him/herself up

Finally there are people who are really interested in the idea of extended hours and the issues and benefits it brings.

Might I suggest that Nocturnal be renamed Nocturnal/Extended Hours to cater for the growing interest in what is the future for long term dialysis patients?

and 2)...
 
Although this is maybe not the thread, why have a forum devoted to Nx stage...am I the only Fresenius user out there? It is really useful to exchange ideas with other users of your machine and the distinguishing feature of users of both machines is that we are dialysing at home, rather than in a centre and consequently advice is not that easy to come by. This is surely the function of IHS.

Why not...Home users and their machines?

What do you all Think?

[Rerun]

The owner who started this forum in 2005 is now dead.  We are just trying our best to keep it going.  We are not paid to develop this extravagant forum to touch every issue with a different title and its own topic. In fact we are not paid at all.  Donations keep this live and on the web. I wish we had General Dialysis Discussion, Transplant Discussion, and Other...that's it..... personally.  The owner started the NxStage topic because it was the newest thing and he was one of the first users.  Then he died.  He was also in a wheel chair so that is where that topic came from.  I have freckles so maybe we should start a topic "people on dialysis with freckles".   

To me Nocturnal is for NIGHT time users. 

Just my opinion.   

[jbeany]

Bruno, I think nocturnal is one of the forms of D that most of our members our least informed about, because it is often the one least available.  Where I did D, the closest nocturnal center was 7 hours away.  Add in what you have just pointed out about the different meanings, and it's even more confusing.

As Rerun said, we're trying to keep up the vision Epoman had when he began this website.  We have made changes to some of the forums since he has passed on, but the admins and mods have also done what they can to keep this up and running while trying to stick to his vision.  We haven't renamed or rearranged a lot of forums, although there have been a number of suggestions about it lately.  Partly, it's because it's difficult to get all the owners, admins, and mods in one place long enough to seriously consider some of these changes, especially ones that are relatively minor in how the website functions as a whole.  We are suffering from growing pains a bit, but we're doing our best to keep up in spite our our own job and health issues. 

Epo did push NxStage very heavily.  You have to understand that in a historical context - it was brand new, it was the first treatment he'd ever found where he could be in total control, and it made him feel better than he had in years.  (And, yes, Epoman was a dyed in the wool control freak, so he truly, truly loved what he could do with NxStage!) 

Bruno, I love your 3 part definition.  While I can't guarantee any changes will be made to the forum title, would you do me a favor anyhow?  Will you start a separate post that clearly defines and explains those 3 points?   Under a clear title like "The 3 Definitions of Nocturnal Dialysis."  3 Types?  3 Kinds?  Something along those lines, anyhow, so that those of us not as familiar with nocturnal have that reference?  I think it would be a big help.
Thanks

jbeany, Moderator

[MooseMom]

I do agree that the NxStage forum might be renamed.  As a matter of fact, the website "NxStage Users" is considering a name change now that more portable machines enabling a patient to do home hemo are coming on to the market, which is a great step in the right direction!  I don't know what you'd rename it as, though..."Home users and their Machines" is a good starting point.

I would never presume to change anything about Epo's vision of this site.  It is fundamentally sound and should be cherished.  But thankfully, the world of renal medicine and dialysis is changing, and changing quickly, so the challenge for IHD is to remain relevant but not over-lawyered.  All of the people who make this site work do a wonderful, wonderful job of keeping to the vision yet also remaining welcoming and informative to the many new members.  I am grateful that they welcome suggestions and trust their judgment to incorporate those that are constructive.

Bruno, I, too, would really like to see you start a thread as suggested.  Please do!!

"People on dialysis with freckles" may be overreaching, but "Pre-dialysis people with Streaks of Grey Hair" would be very useful!

[Bruno]

Thanks Beany, I appreciate your comments and advice and yours to, Moosey. I now understand what you are up against and will try to work within what we've got.
I might add that I've had the same experience with Fresenius as Epoman had with NxStage, It quite simply saved my life and Rerun, there's no need to speak like that to someone who is trying to do his best for the site and yes, I volunteer too and have for years.

[MooseMom]

Bruno, I really would appreciate you starting a thread like it was suggested, talking about the various definitions of "nocturnal" dialysis.   Here's why...

1.  Several months ago, my husband contacted the clinic I will be going to one I start D to ask about nocturnal D on NxStage.  He was told that nocturnal on NxStage was not yet approved by the FDA, but that the clinic would be very happy to support me in "extended" dialysis.  I just want to be able to sleep through it! 

2.  Reading the post from Dialysis Dan about this very subject, he says straight up that one should never use the word "nocturnal" when requesting this type of therapy, rather, use the word "extended" because then most resistance falls magically away.

So, when my time comes to start, I would like to have a better idea on how to broker this deal.  I want to do hemodialysis at home while I sleep.  End of story.  How do I successfully ask for that?  Which wording should I use?  So yes, please start this discussion, Bruno!!!

[lmunchkin]

Bruno, I think starting another thread would be great, because it is confusing in some ways!  I don't think Rerun was stating that your idea was bad! Quite the opposite, she is just letting all know that they do the best they can with keeping the order of EPOMANS wishes in tact!  I thank God for all of our Admins, moderators and all involved in keeping this site on! 

Im sure you would agree, it is the Best found so far! I don't think she meant it in a negative way towards you.

MM, the clinic told us the same thing when we asked about nocturnal with NxStage.  Just to ask for extended dialysis!  I believe anybody could do the "Extended Dialysis" with NxStage. Lowering BfR and Flow Fraction for starters. Of course, it would have to be okay by neph.

Again, Bruno, please do new threads in regards to this!  This may clear up some confusions for new people coming to this site!


lmunchkin     

[Bruno]

Thanks Munchy and Moosey, I'm collecting my thoughts on the issue and will post shortly.

[MooseMom]

Thanks Munchy and Moosey, I'm collecting my thoughts on the issue and will post shortly.

Yay, because the more I think about this subject, the more my little brain wants to explode.  I get more and more confused by the day, and I think if we really want the best treatment for ourselves, we have to have a clear definition of just what that is.

[jbeany]

Thanks Munchy and Moosey, I'm collecting my thoughts on the issue and will post shortly.

Thank you, Bruno - I think a clear explanation will help a lot of people.

[JohnJ]

I have freckles so maybe we should start a topic "people on dialysis with freckles".   

To me Nocturnal is for NIGHT time users. 

Just my opinion.   

I only have freckles in the summer. Do I get my own topic too? 

[Mainstreetmagic]

Bruno, (and others)

Here I discovered this site and was going to post here in nocturnal and then I discovered that Nocturnal can mean many things to many people.  Now I am slightly confused. I am on Nocturnal at a Fersenius clinic and do my dialysis at the clinic for 8 hours three times a week. There are so many of you out there who do different types of nocturnal which I had never heard of.  Oh well. To each his/her own. I have no questions, but just thought that I could be of some small assistance here.  I am sure that I will probably have questions at some time.

[noahvale]

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