Name Change?

[Hemodoc]

I was told although we have a place to vent, we have to be mindful of other people feelings.  Promoting a form of dialysis is one thing but telling another patient he or she will die if he or she don’t use this or that form of dialysis is one of the reasons this site is frowned upon by some people.  It is very hard for some patients but to hear a member say a patient will not live long because he or she chooses not to do dialysis that way or that long can be a dangerous thing to some patients who do not have a choice.  They can give up more quickly by thinking that they cannot live an active life in-center However, I am glad that there are patients who choose to stay in-center and are long-term survivors  because  they are  inspiration to all in-center patients.   

Very, VERY good points!!!

It is important to support and advocate for the vast majority of patients who are in-center, no matter what the reason.

Well,  first, the statistics are quite clear, American dialysis patients simply don't spend enough time on dialysis when compared to Europe, Japan, Australia and New Zealand.  That is not a message most folks will hear in-center at all.  If IHD has many that champion these simple truths, bully for them. It is a message that in many ways is carried only by patients since so few in the American dialysis industry understand these lessons.  A simple question one could ask is if not IHD, then who will stand up for optimal dialysis?

As far as a name change, since most are in-center as noted,  the few of us who experience the lack of iatrogenic complications of short, rapid and violent dialysis sessions have a great affinity to spread themessageof a better way to do dialysis.

I don't see a dichotomy between home patients and those in-center.  We are all under the same burdens of renal disease and yes, I hate that I need dialysis to sustain my life, but I am grateful that I can dialyze in the comfort of my own home where all is in my control. 

If in-center is your choice for what ever reason,  get the center to give you as much dialysis in the most gentle manager possible.  I see no problem with fols at home also serving as an inspiration to those in-center.  The same principles of optimal dialysis aply no matter what setting.

[kristina]

I finally remember again what drew me to IHD all those years ago :  it was the name “I hate Dialysis”.

As a pre-dialysis patient (just been diagnosed with ESRF and 6 months to go until dialysis) I tried very hard to find advice on the Internet

how to keep my “two little fighters” functioning for as long as possible.

When I came across IHD, I immediately thought that a forum called “I hate dialysis” consists of kidney-patients
 
who try to avoid dialysis for as long as possible (just like myself) and tell each other tricks and diets

how to keep those kidneys functioning for as long as possible,
 
or, when dialysis can’t be avoided any longer, the people on the forum make  at least the best of it and assist each other

in order to survive dialysis as well as it can possibly be survived...

[kporter85db]

I love IHD.

But......I would not place a flyer at my clinic or wear a t-shirt with that on it. Whereas I would if the name were different.

I understand there will probably never be a name change and I certainly would not want to do anything to disparage Epoman or his legacy.

Maybe we could have a conversation about adding to the name (instead of just an outright change) to make it more palatable for some.

Some possibilities:

I Hate Dialysis, I Love Life
I Hate Dialysis, I Love Dialysis
I Love Life but I Hate Dialysis

Or, instead of an official name change, how about some promotional materials that downplay the negativity of the IHD name and highlight its positive side.

I'm really just thinking..."out loud"

[Hemodoc]

Think about it, if IHD was a name folks were ashamed of, then explain why this site now has over 9000 members?

Nothing wrong with the name whatsoever and I have and would post an ad at any dialysis unit for this site. If the for profit based dialysis centers get their feathers ruffled by a site that tells the truth about their dialysis practices in the name alone, then so be it.

The truth is that IHD tells the truth of in-center dialysis practices in the US and that chaps their hide a bit. The resistance to this site has nothing to do with its name I am afraid. Instead of learning from patients and improving care, the for profit staff are only setting up a rear guard action to preserve their failed practice model. One day, they will no longer stand when IHD membership swells to a hundred thousand folks. In fact, I believe folks should just start handing out flyers for IHD to all of their fellow patients.

Name change? No way, it is brilliant and effective and tells the truth right in the name alone.

The answer from the administrators and I sure will  be Epoman's. If you don't like the name, go get your own site. Name change, no, it will never happen and I am fine with that.  Besides, IHD is about as hard to remember as I am capable any longer. IHD is just fine in my opinion.

[noahvale]

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[obsidianom]

Think about it, if IHD was a name folks were ashamed of, then explain why this site now has over 9000 members?

Nothing wrong with the name whatsoever and I have and would post an ad at any dialysis unit for this site. If the for profit based dialysis centers get their feathers ruffled by a site that tells the truth about their dialysis practices in the name alone, then so be it.

The truth is that IHD tells the truth of in-center dialysis practices in the US and that chaps their hide a bit. The resistance to this site has nothing to do with its name I am afraid. Instead of learning from patients and improving care, the for profit staff are only setting up a rear guard action to preserve their failed practice model. One day, they will no longer stand when IHD membership swells to a hundred thousand folks. In fact, I believe folks should just start handing out flyers for IHD to all of their fellow patients.

Name change? No way, it is brilliant and effective and tells the truth right in the name alone.

The answer from the administrators and I sure will  be Epoman's. If you don't like the name, go get your own site. Name change, no, it will never happen and I am fine with that.  Besides, IHD is about as hard to remember as I am capable any longer. IHD is just fine in my opinion.

Peter, I have the utmost respect for you. You are an inspiration . I value your opinion on most matters. But sorry , on this one I disagree to the point I have taken your advice and what you said of Epoman, I have moved on. This name change that I brought up has brought out too much negativity here for me to feel comfortable. I wont burn any bridges and say I wont be back but something someone posted today hit me . It was the post by a new person, Tcoolbroth . She posted about being happier and feeling better on dialysis then after her transplant. Yet she felt a need to apologize for writing this. THAT REALLY HIT ME.  THAT SPEAKS VLOUMES FOR WHAT IS WRONG WITH THE NAME and some of the attitude seen here . Dont you see?? All the negativity and HATE for dialysis is like a disease itself. It made her afraid to even say SHE PREFERRED DIALYSIS. That is why I HATE the name. WE are sending off the wrong message . It puts a lot of people off. Noahvale is correct , we still only tap 1 to 2 % of all renal patients. WE CAN DO BETTER.
My wife and I dont hate dialysis. We are grateful EVERY DAY it works and keeps her alive unlike her father who died in 1962 because there was no cure for his illness. Thank the lord or whomever, that  we do have a treatment for kidney failure that works. It is not perfect but it works. If anyone here had liver failure and couldnt get a transplant quickly THEY WOULD DIE because there is no dialysis for the liver . Only the kidney of all vital organs can be substituted for by a machine. I am grateful every day dialysis exists and it gave me my wife back. Dialysis is not the enemy , it is the savior for those with renal failure which is the real enemy.
You can all hate the other enemy which is the American WAY of dialysis which is money driven, but thats another issue . But I am tired of all the hate aimed at a life saving treatment. I hate that someone new here had to aplogize for prefeering dialysis. Shame on anyone who made her feel that way.
Now go for my jugular if you want .  But remember what goes around comes around. While you spew hate for dialysis many of you would be dead without it. Thats the real truth.

PS. Bye being so down on dialyisis we are scaring away people who may be getting close to end stage renal disease and are fearful enough. They already fear what is coming , and talking negatively about dialysis so much just makes them more afraid. Not everyone can have a transplant, and so encouraging them in their upcoming dialysis would be a far better way to go. For some of them it is an inevitabity and hearing how much it is hated only creates fearful ,scrared, stressed out people. Is that what we really want?  I think we can do, better. The truth about dialysis is one thing, but I fear we have become like the old Soviet Union newspaper Pravda that only allowed one version of the truth . No dissent was allowed.

[Zach]

BTW, I went through a name change process back in the 1980s when I was president of the Atlanta Area AAKP chapter.  AAKP (American Association of Kidney Patients) was formed in 1969 as the National Association of Patients on Hemodialysis and Transplantation or NAPHT.  It was a mouthful to say, hard to explain to the lay public, and with the advent of PD, no longer inclusive of who we were.  The name change caused a huge furor, especially with the "old-timers" and some of the founders of the organization.  It became a personal issue and they couldn't see the forest beyond the trees.  While the organization might now be a shadow of its former self, the name change was a huge positive.

I remember those days when NAPHT changed into AAKP.
Originally, it was just NAPH --without "Transplantation."

 

[MooseMom]

PS. Bye being so down on dialyisis we are scaring away people who may be getting close to end stage renal disease and are fearful enough. They already fear what is coming , and talking negatively about dialysis so much just makes them more afraid. Not everyone can have a transplant, and so encouraging them in their upcoming dialysis would be a far better way to go. For some of them it is an inevitabity and hearing how much it is hated only creates fearful ,scrared, stressed out people. Is that what we really want?  I think we can do, better. The truth about dialysis is one thing, but I fear we have become like the old Soviet Union newspaper Pravda that only allowed one version of the truth . No dissent was allowed.

If you have the time, you are welcome to go back to the earliest of my billion posts, and you will see how openly I expressed my sheer terror of dialysis.  In a very strange twist of fate, my mother ended up on dialysis and spent the last 5 years of her life on in-clinic D.  I watched that poor woman struggle, and my fear grew.  I saw the worst of what D has to offer. 

THE ONLY PLACE WHERE I FOUND ANY ENCOURAGEMENT AND GENERAL BUCKING-UP WAS, AND CONTINUES TO BE, IHD.  IHD WAS, AND CONTINUES TO BE, MY EMOTIONAL OASIS FOR ALL THINGS RENAL.  DESPITE THE NEGATIVE BUT HONEST COMMENTS ABOUT DIALYSIS, THESE PEOPLE WERE THE ONLY ONES WHO TOLD ME THAT IT WOULD BE OK, THAT I WOULD BE OK, THAT THERE WAS NO NEED TO PANIC, THAT THEY'D BE RIGHT THERE WITH ME AND TO PLEASE ASK ANY QUESTIONS THAT OCCURRED TO ME AS I WAS SOBBING AT 3:00 IN THE MORNING.

To even hint that IHD is comparable to Pravda is, frankly, absurd, not to mention being very close to insulting.

Obsidianom, everyone has their own truth.  Your wife's truth is that she loves dialysis and is extremely fortunate to have someone like you to assist her doing home hemo.  I won't repeat myself as I have already pointed this out to you.  Peter's truth is that he decided against transplant because of reasons he can explain if he wishes, and I have never seen ANYONE ON IHD bash him for making that decision.  But there are many other members whose truths include an awful lot of anxiety and bad effects from dialysis AND the whole for-profit way it is delivered.  Their truths are just as valid as your wife's. 

If there has been any one sustained argument/debate, it has been about which modality is better.  I've never seen any member make anyone feel bad for NOT choosing transplant. 

I've gone back to Tcoolbroth's intro in which she states that she wished she was still on dialysis instead of having had a transplant.  I've seen nothing on that thread that leads me to believe that she needed to apologize for expressing that sentiment.  Maybe someone else on some other board said something to that effect, but not here.

[iolaire]

Think about it, if IHD was a name folks were ashamed of, then explain why this site now has over 9000 members?

Because people find it via searches, it seems like there is active posting, etc...  So it appears to be a supportive site where you will get interaction with others and learn.  It's the community people (like me) are seeking, even if the branding does't quite align with our views.  Obviously others identify with the branding more than others.

[MooseMom]

I just googled "dialysis message boards", and IHD came up first.  However, there are other message boards out there if people do not like this one.  I know Davita has one.

[noahvale]

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[MooseMom]

This from Tcoolbroth's intro can easily be interpretted as an apology:  "I felt so much better - mentally and physically - while I was on dialysis. Sorry guys , I am just giving my honest opinion."

Yes, I can see that she was apologizing, but why?  And, who are the "guys" to whom she is saying sorry?  Did someone on IHD say something to her to make her feel like her honest opinion wasn't welcome?  What am I missing here?

[MooseMom]

Oh, and if the name of this site is such a problem, then why has someone who regrets having a tx and openly and honestly says she felt better while on dialysis choose to join a site named "I Hate Dialysis"?  LOL!

[jeannea]

Obsidianom, I would not tell anyone that they can't like dialysis. I would tell them they can't tell me I have to like dialysis. You are well educated and appear to have good resources. Your wife is able to have home dialysis without having a lot of the regular stresses because you are there to do her care.  I can understand that with her getting frequent home dialysis and the personal care from you that she feels better on dialysis. She has the ideal situation. Most of us do not have anywhere near an ideal situation.

I did not see the post where someone apologized. I missed it. It's hard to know if she feels like that from here or her dialysis center. I think that increasing the percentage of dialysis patients we have here would be nice but impractical. From looking at the center population where I went for hemo, only about 1% were even using the internet. They're too old, too sick, and/or too poor to have access. The dialysis population in our country could lead me on a really long rant about earlier care for diabetes and how we treat old people but it's too much to type.

I realize that this feels very personal to you. I've been caught up in some issues before and taken it very personally. In the end, I'd rather be here than not.

I have always dreaded dialysis. I put it off for about 20 years with treatment and a living donor. I did not find out about this site til I was already on dialysis. Dialysis is one of those things you truly can't understand until you try it. Some people are much better about keeping a happy attitude even when going through something awful than others. I'm not that person.

[Hemodoc]

Well, Epowife still owns this site. I seriously doubt she will alter her husband's legacy. I think that will be enough said and yes, I never met Epoman myself but shucks, he created a great site. It is his legacy, his work that continues. There is honor in giving honor to his memory. I stand fast, IHD is just fine. If folks are not happy, well, you know what Epoman would say.

Secondly, how is voicing MY opinion authoritarian? I have NOTHING to do with IHD decisions. They have put up with my ranting for quite some time.  I suspect that they will put up with the ranting on this thread as well. Shucks, how is that "authoritarian?"

[MooseMom]

Dialysis is one of those things you truly can't understand until you try it. Some people are much better about keeping a happy attitude even when going through something awful than others. I'm not that person.

And that's jeannea's truth.  It probably would be mine, too, regrettably.

[Hemodoc]

Seriously, does ANYONE "like" dialysis?  For real.

I hate dialysis. I hate my renal disease more. I call my Pureflow my "torment" machine because it is a pain in the neck to keep it going day by day. I love to be able to vent about these difficulties.

Yes, I do appreciate dialysis more than you can know. But, shucks, I really do hate dialysis especially those huge freaking needles!!! Come on folks, do you know anyone, anywhere who "likes" dialysis? To say you appreciate something, feel better with something is quite different than stating you "like" something. No way, I really hate dialysis. The name is perfect in my non-authoritarian opinion. 

[MooseMom]

You can all hate the other enemy which is the American WAY of dialysis which is money driven, but thats another issue .

But don't you see?  For too many dialysis patients, IT'S THE SAME ISSUE!

Now go for my jugular if you want . 

I don't think anyone wants to do that!!   

While you spew hate for dialysis many of you would be dead without it. Thats the real truth.

But there's another truth, and that is many people die from dialysis.  There is a reason that the average life span for a patient on D is only 5 years.  For too many, it's just a slower death.

[noahvale]

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[MooseMom]

I hate dialysis. I hate my renal disease more. I call my Pureflow my "torment" machine because it is a pain in the neck to keep it going day by day. I love to be able to vent about these difficulties.

Yes, I do appreciate dialysis more than you can know. But, shucks, I really do hate dialysis especially those huge freaking needles!!! Come on folks, do you know anyone, anywhere who "likes" dialysis? To say you appreciate something, feel better with something is quite different than stating you "like" something. No way, I really hate dialysis. The name is perfect in my non-authoritarian opinion.

Oh, well said!  You can appreciate something without LIKING it.  Good distinction. 

[MooseMom]

The point of the name, again from my POV, could arguably be keeping THOUSANDS OF OTHERS from either finding it or being referred to it.  Very, very simple concept.

You may well be right.  But I'd still be interested to know to which online sources most clinics refer their patients for information and emotional support.  Do you know?  Would YOU refer a new patient to IHD?

[noahvale]

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[shayron1982]

I am new here & to be honest, the name drew me in...not because I hate dialysis, but because I felt like with a name like that it wouldn't be "all serious, all factual, all the time". The name led me to think it would be more laid back & all things good, bad, & ugly would be discussed. I am just going to put my  in and hope that is ok as a new comer. I think the name appeals to a younger demographic right now, also to people who have a "make lemons out of lemonade" mindset. I can see where it may not appeal to (for lack of a better word) more serious, conservatiive people unless they actually come to the site & see that it is a mixed bag community, with all types of people, with all types of treatment & all types of different feelings about their treatment.

[MooseMom]

That's interesting, shayron!  Yep, it takes all kinds, and that's pretty much who we are!

[noahvale]

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