Name Change?

[MooseMom]

She feels strongly that dialysis is not the enemy ,it is kidney disease that is. She prefers we see dialysis as a way to save lives that 50 years ago couldnt be saved, much like her father.  It is not perfect but it is the best we have now and beats the alternative.
 

No, dialysis is not perfect, but there have not been many efforts to make it less harmful than it is now.  I know you've read the postings of hemodoc and Bill Peckham and other advocates who have railed against the way D is offered now in the US.  Would people discuss these issues in a forum NOT called "I Hate Dialysis"?  Every year there are new gadgets for entertainment, but there has not been much improvement in dialysis technology.  NxStage is about all we have, and while it is great for some people, there are far too many renal professionals who have never heard of it or who don't even mention it.  So we hate not only dialysis but also all of the ignorance and manipulation that goes along with it.  Many patients just do not have the resources (like having a husband who is an MD) to fight back. 

[MooseMom]

Just as a personal aside, if I were to find out that my surgeon were reading I would be horrified. So I guess I'm a bit selfish, too. I don't want every last person involved in renal failure to join. I also am not too psyched about the idea of Gwyn joining. I would censor myself a bit more if I thought he were reading. He is not a reader, so there is little danger of him deciding to come on here. I think he is mystified by my spending any time on here at all.

Good points, cariad! 

[kristina]

Hello again,
I have just talked to a friend who is very asthmatic and relies on his Ventolin to keep alive whenever he has an asthma attack.
He told me that during his childhood he was suffering every day and his life was horrible without Ventolin and Piriton.
One half tablet of Piriton saves him from sneezing, watery eyes, irritating eyes and irritating skin and asthma attacks.
He is very grateful to the people who invented „his“ Piriton and “his“ Ventolin is his most important life saver.
He has a Ventolin just about everywhere in every pocket, beside his bed, beside his desk and he knows exactly where his Ventolins are.
Without Ventolin he would not be alive today and that is the truth.... He looks at Ventolin as an angel and he considers Ventolin also as his very best friend.
 
He thinks that if we „hate dialysis“ we might loose respect to our life saving sessions and we might perhaps even skip dialysis sessions because we hate it.
My friend thinks that might be the wrong way to look at things because like his Ventololin, dialysis keeps us alive to enjoy more things in life
...and to have a chance to discover more in life.
His outlook made me change my mind and reconsider and perhaps a compromise might be good as a title because dialysis keeps us alive
and it gives us a chance to continue with our lives.
If we „Hate“ dialysis, our most important live saver, what is there left for us? Would it not be better to make „friends“ with this machine which assists us to continue our lives
and our hopes, our aspirations and our ideas?

Just a thought...

[Hemodoc]

Is it really the name that's the problem?

I've dialyzed at dozens of centers in my travels throughout the U.S. and came across plenty of nurses and social workers who wouldn't allow me to leave patient information pamphlets published by the American Association of Kidney Patients (AAKP).

There will always be some renal professionals who prefer to keep the information loop closed to their patients.
An ignorant patient is a quiet patient.

 

  So true Zach. There is nothing at all wrong with this site or it's name. There is a HUGE problem with the American dialysis industry that promotes an unhealthy treatment protocol which causes serious iatrogenic complications for its patients. The nurses and techs for the most part are quite ignorant of any optimal dialysis issues. It is not surprise to me that techs are "negative" about IHD and even AAKP because IHD often has discussions on how deficient American dialysis techs and nurses are in promoting optimal dialysis techniques. As far as "I Hate Dialysis," well, yes, the way American style dialysis is provided, I do hate dialysis for sure. So, name change, why? IHD is a place where most on conventional in-center dialysis can complain about conventional regime and learn of a better way to do dialysis. Epoman himself had this experience as he switched from conventional to NxStage. In fact, I trained with the same nurse and the same room as Epoman at Kaiser Sunset. If it means anything at all, the staff that trained Epoman have no problem at all with IHD, in fact they read it often. I will let Epoman's legacy live on and yes, we should honor what he started. IHD has been a great place to commiserate together about renal disease and conventional in-center dialysis. Until the day that all in American have true access to optimal dialysis, yes, I hate dialysis as practiced for the majority of patients in the US. IHD is quite appropriately named especially when we know and understand Epoman's journey on dialysis and his renal disease that took his life way too early. IHD is just fine and there is absolutely no reason for anyone to be negative about IHD or it's name. There is a great legacy with this site.  I have no problems with it's name or Epoman's legacy. My vote is not to bother Epowoman with any name change since she still is the owner of this site. She continues this site in honor of her husband. Should we likewise not continue to honor what he brought to life?

[MooseMom]

Hemodoc, you've pretty much summed it up!   

Kristina, while I do understand the point you are making, there is a vast difference between Ventolin and dialysis.  It's more than making friends with a machine, rather, it's like making friends with an entire industry that is making profits from people who are undergoing an extraordinarily invasive treatment that ultimately is harmful, all as explained by hemodoc.

[Hemodoc]

Shucks, if folks have a better name and a better way of doing a site for dialysis patients, there is nothing to keep them from doing their own website. "I Hate Dialysis" works in large part because that is the way many people feel about conventional in-center dialysis. Remember, we have over 400,000 on dialysis in the US and only a little over 5000 on NxStage which is only a little over 1% of the dialysis population. Home Dialyzers United started as NxStage Users by Rich Berkowitz in part to have their own website promoting a positive aspect of dialysis. Nothing wrong with that, but IHD is also a place where dozens if not hundreds of patients, perhaps thousands who were ready to give it up altogether found out through peers that there was a better way to do dialysis. I am afraid that there are very few dialysis patient web sites that can make that same claim. I don't believe it is any far fetched claim to understand many found IHD by simply doing a google search expressing how they feel about dialysis by typing in the words, I hate dialysis. In fact, looking at it from that perspective, it is a bit of a genius marketing ploy to have the name I Hate Dialysis since thousands of patients in the US express that sentiment. IHD in my mind is quite appropriate as a name and if the nurses and techs are negative about a site the exposes their deficiencies, so be it. In such, IHD plays a role in changing our deficient American dialysis system. No, nothing wrong at all with the name, IHD. In fact, there is much that is right and just perfect with that name.

[Zach]

Epoman knew exactly what he was doing when he named this site "I Hate Dialysis."
It is a great brand, and it has brought thousands to this message board.

I personally don't hate dialysis and I told Epoman that fact in our early discussions.
He had absolutely no problem with my perspective and encouraged me to post often.

Here is a link to a perfectly good site for people with CKD.  Its name is KidneySpace and is sponsored by the Renal Support Network:
http://www.kidneyspace.com

Do nurses and social workers send their patients to this site in droves because of the name?
I think not.  Just look at the site traffic stats.

 

Edited out:  Shakespeare's quote.

[obsidianom]

Well whatever happens I am happy that starting this thead brought a lot of posting and people out. It was real quiet for awhile there. It even brought Hemodoc back. If anyone noticed he hasnt been around much lately and was missed. Welcome back Peter.

[Hemodoc]

Well whatever happens I am happy that starting this thead brought a lot of posting and people out. It was real quiet for awhile there. It even brought Hemodoc back. If anyone noticed he hasnt been around much lately and was missed. Welcome back Peter.

No problem obsidianom, but actually, I have posted quite a few times in the last few days. I must admit that I have been quite busy remodeling my new home and getting our condo ready to sell. We had an open house there yesterday with 7 groups taking a look and two showing serious interest in the condo. All is well in Idaho and I have the greatest job of all time, hanging out and teaching my 4 year old grandchild. Life is good and dialysis is good, IF you can get enough of it.

[Dman73]

IHD is a great name, one that is easy to remember and does not require an explanation as to what it is about.

It is an Icon that has a decent history and one that is not easily forgotten.

It may not be for the squeamish but is designed for the D survivor.

I discovered this site by googling "I hate dialysis" because that was my current mood.

It is the only site that I am a member of and have learned a lot from the rest of the members.

IMHO...                                              Good Luck All

[Michael Murphy]

The name is what it is.  It states accurately the love hate relationship this condition engenders.  I personally hate dialysis,  it dominates my schedule three days a week I am tied to the machine that keeps me alive and healthy.  After the 5 hours I spend at the Dialysis clinic on a good day I go home and take a two hour nap.  I work and I go to Dialysis for 12 straight days then I get a weekend off.  Someday soon when I retire and escape from New Jersey and retire to the Adirondacks I will still spend a large amount of time each week dealing with Dialysis.   I found this site since it summed up how I felt I come to this site because I find it a great source of information not available any where else, I recommend this site because it actually deals positively with this situation we all find our selves  in. the only change I feel would be appropriate would be a sub title like "I Hate Dialysis" " the site about Dialysis for those who endure it."   

[Rerun]

                   

I'm speechless.  Just a moment.           OK... here goes.

Epoman would say and I quote "Go start your own site".  Simple as that.  I may have left out an "F" word.

Have you heard of the show "Portlandia"?  Then how about "Dialyslandia".  Where everyone is just nice, and happy and weird.

When I had to start dialysis AGAIN after 17 years on a wonderful transplant I googled "people who hate dialysis" and guess what I found.  BINGO BABY!!

I did have the honor of knowing Epoman and he also started a site "IloveNxStage" then he died, and never got it very far.  I called him a traitor for having a name like that but he did love NxStage.

Ob you are not the first person to suggest this.  It is a bad name.  A Bad Ass name.  I love it.  I love the look when I tell a Newbie Social Worker the name of our site.  She chokes.  I love that.  I love that it is different.  Bad Ass!

   

[Zach]

 Bad Ass!

   

 

[kitkatz]

I feel a name change would dishonor Epoman. He started this site because he was furious his posts were being taken down at other sites on the web when he complained about dialysis.  He felt the truth was not allowed to be said.  Other sites wanted dialysis to be painted with red roses and fluffy clouds.  He wanted a place for honesty, where anything could be said abut dialysis.  He also wanted to provide a real support group for people who are going through dark times and light times while on dialysis.

Epoman would have answered your post with "If you do not like the name you are welcome to start your own site."

But with 476.908 posts in 29355 topics and 8975 members, we have become the leading dialysis forum on the net.

I also agree with Rerun IHatedialysis.com is a bad ass name for a group of the baddest asses I know on the net.

There were times in the past seven years I have been here if it were not for the support here I would have lost what little mind I have left.

There will not be a name change.  I hate Kidney Disease does not cover what Epoman wanted these forums to be. This is a dialysis website! Always has been, always will be one!





kitkatz-Admin

[okarol]

I say keep the name. I DO hate dialysis. I never wanted it. I was angry when I returned to consciousness and found myself on dialysis. Angry and confused. While we all go through more positivie times in our lives and other negative times, I really don't think anyone likes dialysis. They may appreciate that it keeps them alive but the treatment time itself sucks. If the "professionals" don't like the name, I don't care. Let them try dialysis and tell us they like it.

I am of the opinion that the professionals who don't like this site would not like it no matter what we called it. These are the people who are afraid of us hearing other opinions. There are still plenty of insecure professionals who don't want to be questioned. And they're trying to run a business for money. I think of the recent discussion on pump speed. For an uninformed patient, you can say you're at the perfect pump speed. For another patient, you may have to spend time discussing pump speed, maybe rearrange who goes in what chair because of changes in run time, etc. I have good doctors willing to give me a real answer and discuss pros and cons but some don't.

We could call this We Love Fluffy Clouds and the same people wouldn't recommend it. Personally, I hate dialysis.

I am not on dialysis and I HATE IT. I also hate traffic and going to the dentist. And rude people. And I hate that people die who never got to live.
It's not about being negative. It's about being honest.
Oh and I LOVE FLUFFY CLOUDS!

[okarol]

  http://www.experienceproject.com/groups/Hate-Kidney-Disease/743052 Here's "I Hate Kidney Disease" going strong with 4 members 

[Zach]

Oh and I LOVE FLUFFY CLOUDS!

And I love you!

 

[okarol]

Oh and I LOVE FLUFFY CLOUDS!

And I love you!

 

  ZACH

[SooMK]

Love your post Rerun!

[monrein]

I very much tend towards the cheerful and the optimistic in my approach to life and am always able to appreciate the positive things that surround me BUT Ihatedialysis and wish that none of us had the need for it. Of course it keeps us alive, of course we're glad it exists, of course most of us choose to live with it rather than check out  altogether but it is overall a big bummer. Sometimes it's ok, sometimes we feel fine but quite often for some and most or all of the time for others it hurts, we feel like crap and we hate it.

I found the site by typing in I hate dialysis in my search bar and there it was. This was after my transplant of 23 years failed. The first time around nothing like this site existed and I am grateful that it does now.

Another very important thing to remember I think is that even if a person is by nature cheerful and has been lucky enough to have escaped depression or severe complications the experiences of others are completely valid and we are all only a thread away from potentially feeling as they do. We can learn from each other, hopefully help or comfort or challenge each other and pretending that dialysis is somehow a picnic just won't work. No name change necessary. I will add finally that I have never encountered any negative reaction from other patients or health care professionals because of the name and I mention it to anyone who has ears. Usually I get a chuckle and quite often people write it down. This happened just last week at a meeting I attended with top fundraiser folk at the fifth largest transplant hospital in North America, the Toronto General. 

[cassandra]

Please keep the name!!!!  It seems to attract the most wonderful people. I love this site, and I love the name, and it changed my life, cos it has that name.

       ,Cas

[cdwbrooklyn]

I think the name is ok; however, I’ve mentioned the name to some people and they thought it was a negative name for a website.  I’ve explained to them that the website is not negative its how the patients feel. 

One day I was searching for something on the internet and this website popped up.  I was curious as to what other patients had to say.  So I logged in.  To my surprise, I was impressed with the website.  I’ve learned so many things.  I’ve shared my experience as well as learned about others.   Also, I was in-center for 11 years and was very burned out.  I wanted to give up because I just couldn’t do it any longer.  I was tried of the foolishness that goes on in-center and, as some mentioned, tried of the ignorance from techs and nurses.  To make a long story short, I saw Nxstage and was curious what type of machine it was.  I did my research and to my surprise became very interested in doing home dialysis.  Had I not looked into this website, only God knows what I would have done because seriously I had enough.   

I was curious why some doctors, nurses, and tech was against the website.  Well to my surprise I was told the members are giving advice to patients that can harm them.   It is dangerous to give a patient advice about their treatment and/or medication when you don’t know the whole case.  I explained that the website does not give advice; it’s for patients to vent and share their experience.  However, some members may have strong opinions but they always tell the patients to consult their doctor.

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.   

Should we change the name?  Absolutely Not 

[MooseMom]

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.

[Zach]

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.   

Should we change the name?  Absolutely Not  :thumb up;

Well said my dear, well said!
 

[Rerun]

Do you want the truth on here or not.  Where do you draw the line at the truth.

If a person comes on here saying .... My grandmother is 97 and has dementia and diabetic and has a bad heart and now her kidneys have failed which form of dialysis should we put her on.  What do we say? 

I'd say .... don't put Grandma through a fistula or cath placement and 3 hours of dialysis 3x a week.  That is in part what I'd say.

Where someone (not mentioning names) else would say:  Oh, put her on hemo and keep her around as long as you can even though she does not know anything except pain at least you can still have Grandma around.

The person could read both and think about both.  Both would be Our truth from experience.