My dialysis center's complaint about IHD.com

[brandi1leigh]

I have to admit that the name of the site and the "die-alysis" line made me hesitate joining. In fact, I lurked around for a while and read a lot of threads before I ever registered or posted anything. I understand where the name came from and I think it's accurate, but I can also understand how overworked social workers might not want to spend the time to investigate. I can also understand units being wary of sending patients to a forum board, any forum board. The possibility exists for anyone to post anything and the units don't want to take responsibility for someone reading something that isn't true and verified. It's the same principle that no teacher I know would send a kid to get their facts from Wikipedia. Yes, the majority of the info is correct, but it's not verified and anyone can say anything. My unit is mostly elderly patients who I don't think are online that much...

[Des]

Unfortunately these days a lot of providers and corporate entities have to protect themselves in this way because people can and do sue for stuff like that - as ridiculous as it seems.

For this reason I add to the bottom of my "signature" That my advise is not medical advise but just an opion. I am covering my  here. 

[KICKSTART]

Well all i can say is when i found the site and it was called I HATE DIALYSIS i thought    more people like me !!!!

[aharris2]

I'll fess up to something that only Meinuk knows - Epoman banned me, not under my name but under a screen name I first signed up with because I wasn't sure I wanted to participate - I just looked it was August 09, 2005. Anyway I came back, as myself and introduced myself (I had registered before he started the you must introduce yourself rule but he didn't see it that way )  it turned out I had registered and mostly looked in on IHD from work so I could never look at IHD from work until recently. You'd have to be a premium member to see any of my posts so let's see who figures it out first - no helping Meinuk.

Bill, were you... (PMed, so as not to ruin it... if I am right)

Any way how about a URL from Monty Python?
DialysisYourMotherWasAHamsterAndYourFatherSmeltOfElderberries.com

[Meinuk]

no helping Meinuk.

No worries Peckham, your secret is safe with me.

And what a good way to boost Premium Memberships.

Now, for my opinion on the name... Yes, it is can be considered a barrier BUT I look at is as more of a filter.  As Kickstart noted, we embraced the name - ultimately.  The fact is, we are here, the industry and the Networks know about us.  Slowly, individual clinics will know about us, and we aren't going anywhere.

ALL advice should be taken with regard to the source.  Just as every individual on dialysis and with a transplant wants to be treated individually, we all have distinct needs. Medically and emotionally. The internet and its value as a peer support venue is being taken more and more seriously. (Just look at our Member's thesis in Australia.  (sorry, I am blanking on your name))

There are great sources for formal CKD education like www.kidneyschool.org   - which I think should be mandatory for anyone on the internet with CKD (and those who love them).

And oh so many others.  I'll plug DSEN now with Bill's big compilation of knowledge and resource links: 

http://www.billpeckham.com/from_the_sharp_end_of_the/ckd-links-and-resources.html

I see IHD as being peer to peer support, (and invaluable at that - the best on the web IMHO).  I also see IHD as an unedited,uncensored REAL picture of what is going on in the trenches (although just a microcosm).

I look at what DaVita has done with their new "Social Networking" and I laugh.  I wish that they would spend that time and effort on training their staff to be more compassionate, better educated about dialysis modalities and safer.  But that is just me keeping Epoman's cynicism when it comes to DaVita's on line message boards alive and well. Anything that is corporate sponsored is bound to be tainted by corporate ethics and shareholder (NOT PATIENT) responsibilities.

That being said, I will tell you that I have day dreamed about IHD being a non-profit, and protecting itself as a 501(c).  Is it weird that I just want to form a board of directors and put Zach on it??? Give Karol a corner office, and make Rerun the head of the party planning committee? Obviously KitKatz would run HR(isn't that what the big stick is for?), and Paris would be Karol's second in Command.  Sluff would be that partner who is always away on secret business, and Richard Mel would be the overseas director of marketing; Bjanne would handle all of the travel arrangements, and serve as interpreter, as for EpoFriend, well, I'd just give him reign over all of South America... yes, I daydream a lot.

Kidding aside, my fear is that we would risk going the way of AAKP and all the other splinter CKD organizations out there (and believe me, they are splintered).  I fear that the minute that IHD starts "Marketing" itself, it will lose itself.

We have had some "out" industry employees here telling us what is right and wrong (in some cases they were wrong).  We also have some semi-undercover industry employees posting here, and they have joined in the camaraderie. Most of all, for any that find IHD, and read, I think that their CKD journey is made a bit easier knowing that they are understood, if they take part or not.  I am MUCH more of a lurker than poster.  In the four years that I have been here, I have posted under 700 posts. So many others participate more than I do, but I have received so much more than I could ever return, and I see that as that as the most amazing gift that Epoman could have given us, a forum to share and help each other along the way.

I say keep the name as it is.  Maybe lose the Die-Lysis. Call it IHD when you talk about it, and people will find us.  You did.



 

[Bill Peckham]

I'll fess up to something that only Meinuk knows - Epoman banned me, not under my name but under a screen name I first signed up with because I wasn't sure I wanted to participate - I just looked it was August 09, 2005. Anyway I came back, as myself and introduced myself (I had registered before he started the you must introduce yourself rule but he didn't see it that way )  it turned out I had registered and mostly looked in on IHD from work so I could never look at IHD from work until recently. You'd have to be a premium member to see any of my posts so let's see who figures it out first - no helping Meinuk.

Bill, were you... (PMed, so as not to ruin it... if I am right)

Any way how about a URL from Monty Python?
DialysisYourMotherWasAHamsterAndYourFatherSmeltOfElderberries.com

Aharris got it

[glitter]

Facebook link  (thanks Karol)

http://www.facebook.com/group.php?gid=46205402133

[Bill Peckham]

These website names show you what happens when URLs are not thought out

[okarol]

 

[Bajanne]

Those were hilarious!! 

[okarol]

no helping Meinuk.

No worries Peckham, your secret is safe with me.

And what a good way to boost Premium Memberships.

Now, for my opinion on the name... Yes, it is can be considered a barrier BUT I look at is as more of a filter.  As Kickstart noted, we embraced the name - ultimately.  The fact is, we are here, the industry and the Networks know about us.  Slowly, individual clinics will know about us, and we aren't going anywhere.

ALL advice should be taken with regard to the source.  Just as every individual on dialysis and with a transplant wants to be treated individually, we all have distinct needs. Medically and emotionally. The internet and its value as a peer support venue is being taken more and more seriously. (Just look at our Member's thesis in Australia.  (sorry, I am blanking on your name))

There are great sources for formal CKD education like www.kidneyschool.org   - which I think should be mandatory for anyone on the internet with CKD (and those who love them).

And oh so many others.  I'll plug DSEN now with Bill's big compilation of knowledge and resource links: 

http://www.billpeckham.com/from_the_sharp_end_of_the/ckd-links-and-resources.html

I see IHD as being peer to peer support, (and invaluable at that - the best on the web IMHO).  I also see IHD as an unedited,uncensored REAL picture of what is going on in the trenches (although just a microcosm).

I look at what DaVita has done with their new "Social Networking" and I laugh.  I wish that they would spend that time and effort on training their staff to be more compassionate, better educated about dialysis modalities and safer.  But that is just me keeping Epoman's cynicism when it comes to DaVita's on line message boards alive and well. Anything that is corporate sponsored is bound to be tainted by corporate ethics and shareholder (NOT PATIENT) responsibilities.

That being said, I will tell you that I have day dreamed about IHD being a non-profit, and protecting itself as a 501(c).  Is it weird that I just want to form a board of directors and put Zach on it??? Give Karol a corner office, and make Rerun the head of the party planning committee? Obviously KitKatz would run HR(isn't that what the big stick is for?), and Paris would be Karol's second in Command.  Sluff would be that partner who is always away on secret business, and Richard Mel would be the overseas director of marketing; Bjanne would handle all of the travel arrangements, and serve as interpreter, as for EpoFriend, well, I'd just give him reign over all of South America... yes, I daydream a lot.

Kidding aside, my fear is that we would risk going the way of AAKP and all the other splinter CKD organizations out there (and believe me, they are splintered).  I fear that the minute that IHD starts "Marketing" itself, it will lose itself.

We have had some "out" industry employees here telling us what is right and wrong (in some cases they were wrong).  We also have some semi-undercover industry employees posting here, and they have joined in the camaraderie. Most of all, for any that find IHD, and read, I think that their CKD journey is made a bit easier knowing that they are understood, if they take part or not.  I am MUCH more of a lurker than poster.  In the four years that I have been here, I have posted under 700 posts. So many others participate more than I do, but I have received so much more than I could ever return, and I see that as that as the most amazing gift that Epoman could have given us, a forum to share and help each other along the way.

I say keep the name as it is.  Maybe lose the Die-Lysis. Call it IHD when you talk about it, and people will find us.  You did.

In one of my earliest conversations in the chatroom with Epoman I suggested he make IHD a non-profit, to help cover the costs and also so he could create new resources for patients, rather than having patients pay for Premium memberships. He was furious. I didn't understand why he got so mad. The room got silent except for me and him. First, he didn't really want input from someone so new to the site  and he also felt that between Premium memberships and t-shirt and merchandise sales he could keep IHD going, without advertisers or donors. He wanted members to be free to say what they wanted, to rant or share without worrying about alienating a sponsor or corporation. That's why he created IHD. We are still doing it that way and it works pretty well. That being said, I would love to have more money to organize IHD meet-ups all over the world. Sluff and I have talked of someday having an emergency fund to help members who are struggling to pay for meds or treatment. It would be cool to give our moderators a bonus someday, to thank them for their endless hours of volunteer time. And I wish we made more, because Epoman's widow Trina still has to kick in cash for upgrades and software problems. But I am proud to say each year it gets better, and that's thanks to our Premium Members and those of you who buy from our online store!
I love your vision though Meinuk! And by the way, I do have a corner office - it's right off my diningroom! 
Personally, I never liked DIE-ALYSIS because I did not want to imagine Jenna dying. But I understand where Epoman was coming from - he had a wicked sense of humor. We'll discuss whether it should stay or go with our admin team. Thanks for your thoughts everyone.

okarol/admin

[Poppylicious]

I don't think I've ever noticed the DIE-lysis in the tag-line at the top until this thread brought it to my attention.  I really must start paying more attention to things ...

 

And for what it's worth, I like 'I Hate Dialysis' ... it's honest and to the point, and it was partly what drew me in to take a gander.