Kidney Failure - Dialysis Online users

Author

Dialysis Online users

Pierre

2006-02-25, 9:56 pm

Dialysis Online was one of the earliest communities for dialysis patients on
the internet. Many including myself were helped by others over the past
decade when approaching or starting dialysis. It was a place where one could
ask a quick question simply and without having to register for anything.
Unfortunately, it caught the attention of trolls and it became infested with
off-topic political and abusive messages.

We can understand that the original operator eventually decided to abandon
it, although we are sorry this had to be done, and disappointed it was done
without any prior notice to existing registered members. Unfortunately, at
this point, Dialysis Online users have fragmented with nowhere to go. Some
have posted on other forums, but most have not been heard from since. I've
set up ESRD Today! to serve the same purpose, and to provide a place for old
friends to meet now that Dialysis Online is gone.

Why me? Well, there's nothing special about me. I'm just a guy who had
chronic kidney disease for 25 years before I finally ended up on dialysis
3-1/2 years ago. I've done conventional hemodialysis in centre, and I've
more recently done both the short daily and the daily nocturnal forms of
hemodialysis at home. Right now, more than a month after the disappearance
of Dialysis Online, nobody else is doing it, and since I'm already active in
the kidney disease and ESRD community with my own website and large support
group, I decide to take the initiative.

I'm a firm believer in peer-support, that is, support of people on dialysis
or with a transplant by people on dialysis or with a transplant, rather than
by sites with commercial interests or with nebulous connections to
pharmaceutical or dialysis companies.

Registration is not required, but posts are moderated in order to keep this
forum on topic and free of disruption. Thank you, and if you are an old
member of Dialysis Online, it will be nice to see you on ESRD Today!

We also heartily welcome new posters, as well as members of the IgA
nephropathy community and other kidney disease communities who have reached
end-stage renal failure. As you know or will find out, once you have ESRD
and you start treatment for it, it doesn't really matter that much what
specific kidney disease got you there. So, drop by and post on ESRD Today!

Right now, I'm trying out one type of web-based bulletin board for this. I
make no promise to keep that particular one, but I will promise you that if
a community does grow in ESRD Today!, there will be continuity should there
be any need to change in the future.

You can find ESRD Today! at
http://www.websitetoolbox.com/tool/mb/pierre

Pierre

rosemary

2006-02-25, 9:56 pm

I just jointed this group because I am in end stage renal failure and
will start diaysis soon. I would like to hear of others' experiences.
I'm new to online groups though and am not interested in communicating
with people selling kidneys....or selling anything else for that
matter.
Who will be in this group? How are kooks discouraged?

Tom Wickerath

2006-02-25, 9:56 pm

Hi Pierre,

I just tried to access your new site, and I'm getting the following error message:

Error 1: The username "pierre" doesn't exist.

Any thoughts on why this is so?

Thanks,

Tom Wickerath
____________________________________________

"Pierre" <nospamemail@anonymous.com> wrote in message
news:6LRzf.8224$924.201537@news20.bellglobal.com...

Dialysis Online was one of the earliest communities for dialysis patients on
the internet. Many including myself were helped by others over the past
decade when approaching or starting dialysis. It was a place where one could
ask a quick question simply and without having to register for anything.
Unfortunately, it caught the attention of trolls and it became infested with
off-topic political and abusive messages.

We can understand that the original operator eventually decided to abandon
it, although we are sorry this had to be done, and disappointed it was done
without any prior notice to existing registered members. Unfortunately, at
this point, Dialysis Online users have fragmented with nowhere to go. Some
have posted on other forums, but most have not been heard from since. I've
set up ESRD Today! to serve the same purpose, and to provide a place for old
friends to meet now that Dialysis Online is gone.

Why me? Well, there's nothing special about me. I'm just a guy who had
chronic kidney disease for 25 years before I finally ended up on dialysis
3-1/2 years ago. I've done conventional hemodialysis in centre, and I've
more recently done both the short daily and the daily nocturnal forms of
hemodialysis at home. Right now, more than a month after the disappearance
of Dialysis Online, nobody else is doing it, and since I'm already active in
the kidney disease and ESRD community with my own website and large support
group, I decide to take the initiative.

I'm a firm believer in peer-support, that is, support of people on dialysis
or with a transplant by people on dialysis or with a transplant, rather than
by sites with commercial interests or with nebulous connections to
pharmaceutical or dialysis companies.

Registration is not required, but posts are moderated in order to keep this
forum on topic and free of disruption. Thank you, and if you are an old
member of Dialysis Online, it will be nice to see you on ESRD Today!

We also heartily welcome new posters, as well as members of the IgA
nephropathy community and other kidney disease communities who have reached
end-stage renal failure. As you know or will find out, once you have ESRD
and you start treatment for it, it doesn't really matter that much what
specific kidney disease got you there. So, drop by and post on ESRD Today!

Right now, I'm trying out one type of web-based bulletin board for this. I
make no promise to keep that particular one, but I will promise you that if
a community does grow in ESRD Today!, there will be continuity should there
be any need to change in the future.

You can find ESRD Today! at
http://www.websitetoolbox.com/tool/mb/pierre

Pierre

gloria212@webtv.net

2006-03-03, 5:59 pm

Would be interested in group for Dialysis patients.

Dont take your organs to Heaven, G-D knows we need them here.

Judanne

2006-03-03, 5:59 pm

Hi Rosemary,

Most people in the group have had or are currently experiencing renal
failure of some sort. Not just patients, but you will also find family,
partners and carers here, too. We are all in different stages of renal
failure, too, from people like you about to start dialysis to people like me
who have had one or more transplants. Some people have more than one
problem, too, so it is not uncommon for instance to find a renal patient
talking about diabetes, or peripheral neuropathy or hypoparathyroidism, for
example.

Generally people here are very welcoming, and supportive as we've all been
in the same place. Unfortunately, lately it seems that there are more and
more idiots trying to sell a kidney. The best way to deal with them is to
just ignore them. In most countries it is not only illegal to buy or sell a
kidney but it is also illegal to offer to buy or sell one, so these people
are actually breaking the law. Because this group is unmoderated, there is
no way to discourage the kooks except by ignoring them.

If you have any questions the best thing to do is to start a "new post" with
the topic in the subject line which will start a thread of responses.
Hopefully there will be somebody online who can point you in the right
direction for some answers.

Judanne

"rosemary" <rosemarysz@earthlink.net> wrote in message
news:1137710472.987638.213990@g49g2000cwa.googlegroups.com...
>I just jointed this group because I am in end stage renal failure and
> will start diaysis soon. I would like to hear of others' experiences.
> I'm new to online groups though and am not interested in communicating
> with people selling kidneys....or selling anything else for that
> matter.
> Who will be in this group? How are kooks discouraged?
>

Judanne

2006-03-03, 5:59 pm

You're in the right place.

Judanne

<gloria212@webtv.net> wrote in message
news:9732-4408B558-471@storefull-3138.bay.webtv.net...
> Would be interested in group for Dialysis patients.
>
> Dont take your organs to Heaven, G-D knows we need them here.
>