Name Change?

[obsidianom]

I am throwing this out to see what people here think. I am not in any way trying to be presumptous or trying to take over here. I realize compared to some of you I am a realative newcomer as I have only been here about 9 months.  I just came to a realization and wanted to get some input.
Someone mentioned in a post that we have a bad reputation here amongst the "professionals" out there in nephrology and dialysis land. They wont recommend the site to their patients, thus we lose a lot of potential people we could be reaching and adding. Thats a shame.
I wonder if part of the problem is the NAME,  "IHATEDIALYSIS". 
I admit it turned me off originally and I stayed away for a long time before joining when I saw the name. It does conjur up the image of just whiny people feeling sorry for themselves.  In fact that is NOT what I see here at all.  Yet the name does kind of infer it.
Look folks, no one in their right mind wants to be having to do dialysis. Thats a given. Its a hard life.  But why rub it in with the name we use.
Maybe we should look at what it is we are doing and discuss what we want the site to be?   Then perhaps we could discuss the name.  Again I am not trying to start a fight or upset the old timers here or the "owners" who do a great job keeping this running. I just would like to open a dialogue on this with the goal of getting more people to this site who may be staying away due to the name . Also I would love to see the professionals refer more of their patients here . We do a great service and can do more with more people.

So its up to all you  now.  Lets "talk" about it.   If the concensus is to keep the name , then so be it.   If we do decide and the owners agree with a name change, then perhaps we can move on to new names.    Thanks for listening.

[MooseMom]

Hi obsidianom!

Everyone is welcome to voice their thoughts, no matter how long (or not) they have been a member of IHD!

There have been people in the past who have suggested a name change.  I personally do not think a name change is going to happen because IHD is the name given by Epoman, and many members feel that a name change would be a dishonor.  Epoman came up with the name for a reason.

I am extremely suspicious of "professionals" who won't recommend this site simply because of the name.  If they bothered to actually visit the site, they would see two things; one, that "We are NOT being NEGATIVE" is splashed all over the place, and two, that maybe these "professionals" don't want to see the havoc and destruction they create by sticking to their for-profit, in-center treatment shenanigans.  We are here to tell the truth as we see it.  Maybe they can't handle the truth.

What's wrong with hating dialysis, especially conventional dialysis?  I am sure you know that 90 some odd percent of nephs, when asked which modality of D they would choose for themselves, do NOT choose the modality that most D patients are herded into.  There is every reason to hate dialysis as it is practiced in the US.

I see an ever growing number of people who become new members of IHD.  There are probably hundreds of people who lurk here for years.  I would be interested to know how many professionals keep silent about this site compared to how many who DO recommend it.  I am not sure what impact the silence of professionals has on how many people find this site eventually.  Most patients probably have internet access, and I'd bet many of them find IHD without the imput of a doc, nurse, tech or social worker.

Obsidianom, in your experience, how many potential members do you think are being kept away from IHD by either the name or by a professional?  Have you spoken about this site with any of the professionals you've encountered?  If so, what have they had to say?  I'd be really interested to know!  Thanks!  

[iolaire]

I personally do feel the name is a deterrent.  As a new member who is generally heathy and I will do my best to remain positive.  Its amazing that my kidney can completely shut down and I'll be able to survive and thrive based on Dialysis!  But I'm worried that people on the forum will take offense at positive posts.  Based on the title of the forum I'm constantly worried that I will cause stress to people who are unable to view Dialysis as a positive experience. (I also feel very lucky that I'm able to see it as a positive experience because I'm not dealing with other medical issues right now.)

When in center I use my iPad all the time and I am sensitive to having the site up when the Techs are around - I don't want to give them the impression that I'm critical of the treatment or the center.

Obviously this forum seems to have a lot of active members, which makes the decision to participate clear - but I do question the negative name. 

I'd feel more comfortable if I was in an forum environment that clearly communicated its desire to make dialysis more livable for all its members.  MooseMom mentions that "We are NOT being NEGATIVE" is splashed all over the place, I think that is a clear indication that the name is a problem since it does give a negative impression/outlook to such an extent that statements of belief have to be posted to try to counteract the domain name. But in the end the domain name is how people identify the forum. 

I'm sure the the history of the site would make a change unlikely, so regardless I'll stay around, well I deal with dialysis as positively as possible and try to maintain a normal lifestyle.

[kristina]

... To be honest, I have always accepted the name/title „I hate dialysis“ because dialysis has been here for so many years...
...and many uncounted people have suffered terribly whilst on dialysis... many people have lost their life whilst on dialysis,
so, in my opinion the title „I hate dialysis“ is honest and to he point....
...most of the discussion here on IHD is extremely honest and always quite to the point...
...I have also noticed that many people on IHD are completely determined to make something out of their life DESPITE dialysis and/or transplant difficulties...
...That is why I feel so very much „at home“ on IHD because - just because I am pre-dialysis ESRF almost since spring 1971 (when my kidneys first failed, picked up again
and now in 2014 they fail again, I have been constantly in ESRF for many uncounted years, my „two little fighters“ have become very tired meanwhile ...
...and the „writing has been on the wall“ for „my two little fighters“ for over 43 years....
... I have tried very hard to have a life and a worthwhile career and studies despite „the writing of the wall“ for my „two little fighters“ and that knowledge has been constantly with me...
...and it has not been easy... I have tried every possible vegetarian kidney saving diet since 1971 ... when the "writing first came on the wall"...
...and I don’t think it is negative to have named IHD „I hate dialysis“; such an honest look upon dialysis has something very positive about itself.
...The positive point about IHD is the determination of many ESRF people to live and make as much as possible in their life...  despite dialysis and/or transplant difficulties...
...IHD stands for people who want to learn how to survive despite their terrible kidney troubles which often messes up lives and careers...
...IHD stands  –  in my opinion -  for people who want to learn as much as possible about their kidney disease in order to survive in the best possible way...
...IHD stands for learning as much as possible to survive as best as possible and on IHD anyone can learn practically anything about diet and other surviving techniques in ESRF...
 ...I never had any trouble with the name/title IHD "I hate dialysis" because it is very honest and to the point and it is also very determined to live despite ESRF...

...Berthold Brecht said once that anyone who faces their situation wholeheartedly has nothing to fear...

...We can't change anything about our ESRF - and we can't change anything about our failing kidneys...
...but with IHD and the honest discussions about how to survive best in ESRF at least we can give ourselves a pretty good chance to have a go and to possibly survive ...
...despite our many ESRF difficulties... by talking with other ESRF people we can give ourselves a chance to discuss difficulties with others ...
...and perhaps there is someone who has experienced such a similar situation...
... just that knowledge helps sometimes a little and does not make life  look too terrible anymore... when we find ourselves in ESRF difficulties...

[obsidianom]

Every nurse and the social worker at our clinic was very negative when I mentioned this site. They seem to all feel it is a very unhelpful place. Now I cant tell you why exactly they have this opinion but the name doesnt help.
I agree with MooseMom that nephrologists would choose home dialysis if they were doing dialysis. That much I have been told numerous times by them and have read the studies. That said, the reason more patients arent on home dialysis is often the patients own choice not to . I realize it is not for everyone and some people simply couldnt handle the work and others dont have a care partner. Our nephrologist actually told me recently he was trying to get more people to do home dialysis . He has learned form my wife and I about Nxstage and now is pushing it.
I agree that incenter 3 day per week is difficult and not any fun. My wife hated it for the 2 months she had to do it. 
Iolare, you wrote a lot of the things I feel. Dialysis has saved my wifes life and given her back to me. Before dialysis she was in the hospital 3 times in 3 months due to complications from lack of kidney function. I almost lost her once. She awas in intensive care for 3 days at one point near death . It scared the hell out of me. She doesnt remeber it much. She was really out of it a lot for those weeks before dialysis.   In the first dialysis session she came to and never went back to being that sick again.   So ----dialysis brought back the most important person in my life.  How can I hate it??
It doesnt mean I have to like kidney disease. But maybe thats the point. Its kidney disease thats the evil or real enemy not dialysis. How about IHATE KIDNEYDISEASE ?

[Jean]

 I like the "I hate kidney disease". Of all the professionals I have talked to, oh, hey that is probably only about half a dozen. One of those is a DaVita employee, and not one single one of them had ever heard about IHD.

[obsidianom]

I was thinking about the comment about honoring EPOMAN the founder. I didnt know him so I wont presume to know what he would say today about the name change. However, if it were me , and I started the site, the greatest honor would be seeing it grow and be more inclusive.  If changing the name brought more members and more prestige , woudnt that be the best way to honor his memory. ?    Just a thought.

[noahvale]

^

[kristina]

.... Every ESRF’ler goes through terrible pains and through a terrible loneliness as soon as they face their situation of ESRF....
... They think about their future of their career and how to combine their career with this disease which makes them depend on survival on dialysis...
...Some people are even left alone by their friends and families to deal with their ESRF-situation all on their own...
... I am quite sure that any one in ESRF who notices on the Internet the headliner „I hate dialysis“ they know instantly they have arrived at the right place...
... A name change would not make the situation „nicer“ for the ESRF’ler... because any ESRF'ler knows that dialysis is not a "nice" thing to do...
...a name change might make it a little „nicer“ and perhaps less grim-sounding for anyone connected to someone in kidney failure...
...but it does not change anything about the grim reality of surviving on dialysis...
... so, perhaps the name "I hate dialysis" fits its purpose and the people it wants to reach perfectly alright...
... and I am sure it reaches people who want to learn how to survive despite dialysis and/or difficulties with transplants...

[amanda100wilson]

I agree with Obsidionom that ' I hate kidney disease' would be a better name, since there are many members on here who are not on dialysis, because they are pre dialysis, transplanted or are care partners or friends, but at the same time, I do understand the reasoning behind why the original members etc. would not wish it changed. 

[MooseMom]

Iolaire, I wish that you did not worry so much about offending IHDers with your positive outlook.  This community strives to make EVERYONE feel comfortable.  Having people post positive things helps those who are having trouble coping with a difficult situation, so you have a LOT to contribute!  Thank you!

Most websites such as IHD attract those very people...those who ARE having problems.  If dialysis is working well and one is generally pretty healthy, chances are one is not going to feel the need for IHD.

If there was a website called "Dialysis is a Godsend", then those people who have been financially, physically and emotionally devastated by ESRD might not feel comfortable in posting about the fears that keep them awake at night.  Many people have no support system, no one to whom they can rant, no one who really understands, and it is important for those people to feel unapologetic for not being able to smile 24/7.

Obsidianom, you make a good point in that it might be a better idea to approach the owner (Epoman's widow) about a name change.  This site has grown tremendously, however, and the additions of forums like the transplant, home D and pre-dialysis discussions have made this site even more inclusive, all without a name change.

And I have to agree with noahvale.  Professionals who have a negative view of this site don't like well informed patients.

Those nephs and social workers who think that this is an unhelpful site are not on dialysis, and I'd like to know exactly why they feel as they do.  Could you perhaps ask them?  If I had a dollar for every post I've read from a newbie that stated, "This place saved my life!" or "Thank God for this site!", I'd be holidaying in the south of France!  I know I felt this way.  Obsidianom, maybe the next time you and your wife see a professional, you could ask them which online resources exist for patients to use to better educate themselves.  Do they ever mention Kidney School, for instance? 

[jeannea]

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.

[MooseMom]

I agree with every word of jeannea's post.  "We Love Fluffy Clouds."  tee hee!

[SooMK]

I think the name is definitely off-putting. Whenever I refer people to it I always qualify it by saying, ...it really isn't negative, it's a really great site with so much activity and information. If the name was something like Dialysis Support Forum or similar I wouldn't feel like that would be necessary. But having said that I can't get excited about a name change. All the great administrators volunteer their time and I just can't imagine what work would be involved with a name change. Those who know what a great resource this is will keep referring people here. If people hear about it often enough they are bound to check it out before forming their attitudes and if they are threatened by people knowing more about dialysis they won't like the site no matter what it's called. I say keep the name.

[Zach]

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.

 

[obsidianom]

So far we have only 9 people comment on this issue.  Where are the rest of you?   I would like to hear from more of you out there. What do you think about the name change , what would you propose if you want it changed and what would you do to get more members.?

[cariad]

Someone mentioned in a post that we have a bad reputation here amongst the "professionals" out there in nephrology and dialysis land. They wont recommend the site to their patients, thus we lose a lot of potential people we could be reaching and adding. Thats a shame.
I wonder if part of the problem is the NAME,  "IHATEDIALYSIS". 

obsidianom, I take what you suggest in the spirit of helpfulness, so if I sound angry or agitated, it is not you nor anyone here, I just have strong feelings about this. I do not support a name change at all

Since I am the "someone" who wrote that post, let's take a look at it and put it back into context:

Karlise! Thanks for joining the group.

Now i have returned to dialysis and I recently found this board after hearing about it in a job orientation/training session.

This is superb news as it sounds like this site was mentioned in a positive way. We get reports from time to time that patients have been told to avoid the forum because some medical professionals believe we only focus on the negatives of renal failure and sit around feeling sorry for ourselves all day. In actuality, this forum is all about helping people make the best of a bad situation.

I hope we will hear more from you, but regardless, thanks for letting us know you're out there and that you appreciate the site.

We are here to HELP. Its time for the "professionals " to take a good look here. We do a lot of commiserating , yes, but also have a LOT of CRITICAL info. Even as a doctor I have learned a lot here.
I hope through my offering "medical information and some education'' that we can be even more useful. When Hemodoc, Peter, is around we add even more.
This site is very useful and important . It would be good if all Dialyisis units and nephrologists would take an honest look and see we have a lot to recommend.

When I wrote 'time to time' it was shorthand for 'very rarely, and probably less so as the internet becomes an increasingly accepted form of communication'. I cannot remember the last time I read a post from a member who was told to ignore the site, but it's been years as far as I know. Maybe Mahatma Gandhi was right, and we are entering phase two: ("First they ignore you, then they laugh at you, then they fight you, then you win.")

I've been on dialysis at two very different times, and both times under unique circumstances. I hated it. Dialysis was torture as a child, only marginally better as an adult because I knew how to fight the know-it-all professionals.

One member here told a story about how the clinic manager where he dialysed announced 'I love dialysis!' You can't reform people like this. We're just farm animals to those sorts, you can hook a cow up to a milking machine or a patient up to dialysis, which will make you more money? And yes, I know all about home dialysis so please don't start up that discussion again, at least not here, and not on my account.

I didn't join for years because of the name, though I read with interest, if only occasionally, from about 2006. It wasn't the 'I hate' part, it was the 'dialysis' because I wasn't on dialysis and I didn't want to intrude on a group of people who were. As I got sicker and closer to dialysis I decided to join only to discover that I would have been welcomed years ago. (I still remember Bajanne, one of our late moderators, exclaiming 'Girl, where have you been? You are totally an IHD person!' I was immensely flattered by that.)

Though I never interacted with Epoman, I am pretty sure from his posts that he would shred any suggestion that the name should be changed. He stated that he wanted something that would get people's attention, and he succeeded. Let me tell you, if any professional had told me to avoid this site it would have sent me running to it all the sooner. If you believe everything your doctors say and think every last doctor has only your best interests at heart, then you probably wouldn't get much out of this site anyhow.

Before joining IHD I was a member of a transplant site until one of the moderators mentioned going to a pharmeceutical convention and hugging the medical director of one of the big companies. He was going on and on about how these people made these brilliant drugs that kept us all alive. Do I even have to explain how creepy this was? I was also told by one of the members that if I had had a better attitude, I wouldn't have got sick. Yes, really. This person knew so little about me that she was not prepared for me to reveal just how young I was when I went into kidney failure. It made her look like a right b!tch. 

After joining IHD I was browsing another transplant site and an admin had removed a post criticizing a transplant centre because this admin was afraid the information would scare patients who were going to that hospital. That thinking is so completely backward and dangerous I don't know what to say about it beyond that. USC SUCKS!!!! AVOID! See? That won't get taken down. And it may save someone's life, or sanity. I like how 'I hate dialysis' gives a pretty clear, thorough explanation of the site and how it operates. We are not people who mince words and if you don't want an honest opinion then you don't want to be here. Some people are not like that, and while they would be welcome here all the same, they need to respect that this site was formed to give people like me a place to say what I want to say about renal replacement therapy.

iolaire, I do find it a bit insulting/bewildering that you think we wouldn't want to hear about your positive experiences on dialysis. Do you really think we prefer to hear people are suffering? How twisted would that support group be? And why would you join if that's what you suspect about us? I think this group is the absolute best at celebrating each and every victory or happy moment that members have, no matter how big or small, we will cheer you on. I believe Epoman would be happy for you so long as you didn't pick a fight with him over whether or not he should hate dialysis. That seemed to get his back up, and rightfully so. If you read his story, he suffered a lot on dialysis, he was on it much younger than you, and he ended up in a wheelchair until he died in his mid-30s. Whether or not he actually hated dialysis (I know he thought NxStage was brilliant) or whether or not he should is not for anyone else to dictate to him. We won't tell you how to feel about it either.

This has become really stream of consciousness and I have to go to work so I'll finish up. I want to keep the name. I hate sugar coating. It took me a long time to find the right site for me, and that site doesn't shy away from shining a spotlight on all the difficult emotions that go with kidney failure. If you read all of this, thank you!!!

[obsidianom]

Cariad, I read all you wrote. No problem with anything you said other than going after Iolare. He didnt say anything negative about anyone. He just sounded like he didnt want to upset anyone with positive comments.    Lets not go after each other. We are all in the same boat of renal disease.
WE actually need more people like you both. More active posting members. It gets REAL quiet around here sometimes(like this past weekend until I postsed this thread).  If you really look at it, there are only a handful of regular posters. That is too bad as more posting brings out more dialogue and ideas.
That is really why I posted this thread.  WE simply do not have alot of active people here lately.   Bring it on people!

[big777bill]

 I think the current name draws more people to the site than it keeps away. When I first realised that I was going to be on dialysis someday I searched the internet looking for sites for people in my position. The site named "I Hate Dialysis" drew me in immediately. It sumed up how I felt at the time. After diabetes, lumbar surgery x2, liver transplantation after years of dying from liver failure now they tell me I'll need dialysis! I DIDN'T WANT TO DEAL WITH ANY MORE ISSUES. So I hate dialysis fit my mindset. Now that I've been on dialysis for 2 years most of that on NxStage. I still hate dialysis but can deal with it much better because of reading what others were going through on here. Sometimes positive is overrated. We need to go on a rant and get the poison out of our system. I love this site though because of what the people on here have taught me about dealing with a bad situation.

[cariad]

Cariad, I read all you wrote. No problem with anything you said other than going after Iolare. He didnt say anything negative about anyone. He just sounded like he didnt want to upset anyone with positive comments.    Lets not go after each other. We are all in the same boat of renal disease.
WE actually need more people like you both. More active posting members. It gets REAL quiet around here sometimes(like this past weekend until I postsed this thread).  If you really look at it, there are only a handful of regular posters. That is too bad as more posting brings out more dialogue and ideas.
That is really why I posted this thread.  WE simply do not have alot of active people here lately.   Bring it on people!

Thank you for reading my post in its entirety, obsidianom. I assure you I was *not* going after Iolaire, I was saying that if he really thinks about it, it would make no sense from both our side and his if we were to reject people for positive comments and experiences. I take the support aspect of this site very seriously, as you will see if you were to delve into some of my posts. I stated very clearly that I have strong opinions about this, but as the internet doesn't allow for consideration of tone, I tried to make clear to everyone that I was not and am not angry about this. I will be honest, though. The day people tell me to not state how I really feel is the day I will be leaving the site. I hope this clears up any misunderstanding.

Posting tends to go in waves, so if it seems light to you now, it will probably pick up. I think if you were to name one culprit for less posting it would have to be Facebook. People come on here, meet other people who understand them and support them, then connect on Facebook and often stop posting much on here. I don't like Facebook at all, so I only post here. I no longer bother asking 'where is this member' because inevitably they are absolutely fine and chatting merrily on Facebook.

[obsidianom]

Cariad, I read all you wrote. No problem with anything you said other than going after Iolare. He didnt say anything negative about anyone. He just sounded like he didnt want to upset anyone with positive comments.    Lets not go after each other. We are all in the same boat of renal disease.
WE actually need more people like you both. More active posting members. It gets REAL quiet around here sometimes(like this past weekend until I postsed this thread).  If you really look at it, there are only a handful of regular posters. That is too bad as more posting brings out more dialogue and ideas.
That is really why I posted this thread.  WE simply do not have alot of active people here lately.   Bring it on people!

Thank you for reading my post in its entirety, obsidianom. I assure you I was *not* going after Iolaire, I was saying that if he really thinks about it, it would make no sense from both our side and his if we were to reject people for positive comments and experiences. I take the support aspect of this site very seriously, as you will see if you were to delve into some of my posts. I stated very clearly that I have strong opinions about this, but as the internet doesn't allow for consideration of tone, I tried to make clear to everyone that I was not and am not angry about this. I will be honest, though. The day people tell me to not state how I really feel is the day I will be leaving the site. I hope this clears up any misunderstanding.

Posting tends to go in waves, so if it seems light to you now, it will probably pick up. I think if you were to name one culprit for less posting it would have to be Facebook. People come on here, meet other people who understand them and support them, then connect on Facebook and often stop posting much on here. I don't like Facebook at all, so I only post here. I no longer bother asking 'where is this member' because inevitably they are absolutely fine and chatting merrily on Facebook.

I have read every one of your posts. I am a reader and read everything here. Remeber I have offered suggestions from all you have written.
I agree that Facebook is awful and I too refuse to be part of it. This is the only place I post anything.
I get my satisfaction out of helping here with my medical knowledge. I enjoy talking medicine and never leave it at the office. Besides my wife it is my favorite passion.
That is why I hope for more people posting here. For selfish reasons it gives me more of a chance to help.
So in the end I care more about getting more people here than about the name . I do feel a name change would be beneficial to bring more people here. IHATEKIDNEYDISEASE would be more inclusive anyway.

[MooseMom]

Obsidianom, as cariad so clearly and correctly stated, the internet does not allow for consideration of tone, so please know that I ask the following questions with the greatest amount of respect.

You have made it very clear that you are grateful for dialysis because it has made it possible for your wife, the one person who means the most to you, to continue living.  We have heard a lot about how YOU do not hate dialysis, but how does SHE feel about it?  We all of us are grateful for whichever RRT has made it possible for us to survive, but it is a HARD way to live and we do not always like it.  Does your wife ever talk about how she feels about dialysis?  Does SHE hate it?

There seems to now be this line of reasoning flowing through some posts about how nephs and dialysis professionals prefer uninformed, quiet patients.  Are you in the position to carry out a little experiment?  If you are in fairly regular contact with renal professionals, perhaps you could tell them that you have friends/family who would like to know more about dialysis, and could said professionals provide you with educational materials?  Could they guide you to online resources that seek to educate AND SUPPORT the dialysis patient so that you could pass this information on to those that are concerned about your wife?  It would be fascinating to see what they say and may just give us all some insight into why they do not send more of their patients to this site.  Thank you!!!

Edited to add:  Over the years, I've read intro posts from newbies who have come to the site BECAUSE OF the name, not in spite of it.

[obsidianom]

Obsidianom, as cariad so clearly and correctly stated, the internet does not allow for consideration of tone, so please know that I ask the following questions with the greatest amount of respect.

You have made it very clear that you are grateful for dialysis because it has made it possible for your wife, the one person who means the most to you, to continue living.  We have heard a lot about how YOU do not hate dialysis, but how does SHE feel about it?  We all of us are grateful for whichever RRT has made it possible for us to survive, but it is a HARD way to live and we do not always like it.  Does your wife ever talk about how she feels about dialysis?  Does SHE hate it?

There seems to now be this line of reasoning flowing through some posts about how nephs and dialysis professionals prefer uninformed, quiet patients.  Are you in the position to carry out a little experiment?  If you are in fairly regular contact with renal professionals, perhaps you could tell them that you have friends/family who would like to know more about dialysis, and could said professionals provide you with educational materials?  Could they guide you to online resources that seek to educate AND SUPPORT the dialysis patient so that you could pass this information on to those that are concerned about your wife?  It would be fascinating to see what they say and may just give us all some insight into why they do not send more of their patients to this site.  Thank you!!!

Edited to add:  Over the years, I've read intro posts from newbies who have come to the site BECAUSE OF the name, not in spite of it.

OK about my wife. I need to give some backround. We have been together 33 years. We have a unique marriage in that we dont let anyone else enter our lives other than our patients . WE are our only social life. We keep to ourselves and prefer only our own company. We talk about everything constantly. WE do not have any real friends , and no children ( our god daughter died at age 18 back in 1996). It has worked for us well. The many medical issues would have damaged a less strong marriage. My wife lives on a feeding tube for food and can never eat, she is on dialysis  and has an auto-immune disorder. I have had cancer in the past few years. So we survive by talking to each other.
Now that said, it was actually my wifes idea to change the name here. I tell her about all the goings on here and she feels the name is a detriment to bringing in more people. It turned her off. We were talking about this again on the way home from the office today at noon. We work together as well as live together . We have shared the office for over 25 years.
My wife does NOT hate dialysis. In fact she looks forward to it every day we do it and HATES the Days off. She feels better after each treatment. That is common on nxstage . She sees kidney disease as the enemy , not dialysis.  I do the work and she just sticks out her arm for me to hook up. Then she works on her computer for the 3 hours.  She has her fistula in the right or dominant arm , yet she adapted to typing left handed and still is happy.
My wife sees the Nxstage machine as her friend and is thankful every day we have it. She was so sick before dialysis and it gave her back her life.  Yes she did not like in center at all for the 2 months. No question it was awful for us both. But at home dialysis is different and she is content to have it as the alternative is awful.  Her father died when she was 15 in 1962 of heart disease which wasnt curable then . She is so thankful dialysis exists and can keep her alive unlike her father.
The reality is I gave up more for dialysis then she did. I had to cut back my medical practice by more than half to have the time to do the dialysis for her. I only work about 10 to 15 hours now and spend most of my time taking care of her. It has forced us to work our whole schedule around the 20 hours a week it requires. We cant go out much other than the office. Yet with all that change I have no hate for it and she has nothing but thanks for it .  We simply see that life has thrown us a bunch of obstacles to overcome and we do it with as much love and dignity as we can together.
So in the end , my wife is actually the person most responsible for my asking about the name change. 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.
 
PS----My wife was appalled that you thought I didnt know how she felt about dialysis. The whole basis of our marriage is TALKING /COMMUNICATING about EVERYTHING.!   I know everything she feels and vice versa.  (she is a retired psychotherapist)

[MooseMom]

Obsidianom, I did not assume that your wife didn't talk to you about her feelings.  I asked because I really didn't know to what extent she confides in you.  I do not tell my husband all of the time about how anxious I feel about my disease out of a desire to protect him.  I am very sorry if I insulted her or you in some way.  So, thank you for sharing more about the depth of your marriage.

I am glad to hear that your wife does not hate dialysis.  We all benefit from knowing that there are people out there who feel this way.

Please keep in mind that most dialysis patients do not have a physician as a spouse and do not have a career in psychotherapy.  Most of us do not have your advantages.  Most of us do not know what to do with our feelings of anger, terror and anxiety.  Social workers in most clinics do not have the time to address these issues in depth.  Most dialysis patients who express their feelings in a clinic setting risk being labeled difficult or non-compliant.  Many patients do not want to burden their family and friends with their feelings.  A lot of us realize that others just don't want to know.

Many dialysis patients might not have access to psychotherapy because of insurance issues.

Many dialysis patients do not have access to home hemo because they do not have spouses who are as eager and loving as you, or it may be because it is just not the right therapy for them.  So again, they do not have your advantages.

Some dialysis patients have had their marriage ruined because of the demands of their treatment.

Many CKD patients don't even know they require dialysis until they find themselves in the ER, so "I Hate Kidney Disease" might not be the best name choice because most people with CKD are asymptomatic, and if they are not, then dialysis is in their future, anyway.

I know you read a lot of what is posted on IHD, so I'd urge you to read as many intros as you can so that you can see how many new members tell us that they've finally found a safe place here at IHD.  It makes you ask yourself "safe from what"?  Safe from those who think they are whining about the luxury of being able to sit around for 4 hours every other day...you've seen the thread about the ignorant things people say to you, so you know what I mean. 

I am very glad that you are on IHD because I know you enjoy sharing your medical knowledge, and I have seen how grateful people are to you.  Maybe your wife could join and share some of her insight into why dialysis is not the enemy.  You with your medical knowledge and her with her profession as a psychotherapist would make a formidable team, and maybe between the two of you, you could help dialysis patients here on IHD not hate it so much.

In the end, I'm not sure our opinions matter because we are not the owners of this site.  The owner has every right to keep the name as it is, and if she reads all of this and decides to change the name, then I'd be fine with that.

[cariad]

]I have read every one of your posts. I am a reader and read everything here. Remeber I have offered suggestions from all you have written.

Of course I recall you making suggestions, though did not notice if it was based on anything I wrote long ago. If you have read every last post of mine, wow, that is remarkably keen.

I agree that Facebook is awful and I too refuse to be part of it. This is the only place I post anything.

My husband is on it, so occasionally I cheat and ask him to send a friend request to someone on here. He has met every IHDer that he has befriended, though, so I guess it's not all that strange.

I get my satisfaction out of helping here with my medical knowledge. I enjoy talking medicine and never leave it at the office. Besides my wife it is my favorite passion.
That is why I hope for more people posting here. For selfish reasons it gives me more of a chance to help.

I truly think that changing the name would be so confusing at this point that it would ruin the site. I have seen relatively modest changes kill a site before. They have built quite a brand here, if I can put it in nauseating business terms. At this point it would be about as wise as revisiting the idea to change Coca Cola's recipe. I'm sorry your wife was so put off by the site name, and yet you still joined.

So in the end I care more about getting more people here than about the name . I do feel a name change would be beneficial to bring more people here. IHATEKIDNEYDISEASE would be more inclusive anyway.

More inclusive of whom? "IHKD" is a little too obvious for me, and a little too safe. Remember our exchange about how I didn't want to see the edge taken off this site? It applies to the name, too. It isn't going to make everyone happy, and that's the point.

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.