I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: obsidianom on March 23, 2014, 09:27:55 AM
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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.
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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! :thumbup;
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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.
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... 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...
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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 ?
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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.
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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.
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.... 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...
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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.
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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?
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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.
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I agree with every word of jeannea's post. "We Love Fluffy Clouds." tee hee!
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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.
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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.
8)
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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.?
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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:
:welcomesign; 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!!!
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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!
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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.
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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.
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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.
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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.
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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)
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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.
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]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.
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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.
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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! :thumbup;
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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...
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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.
8)
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?
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Hemodoc, you've pretty much summed it up! :clap;
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.
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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.
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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.
8)
Edited out: Shakespeare's quote.
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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.
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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.
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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
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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."
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:banghead; :banghead; :Kit n Stik; :Kit n Stik; :stressed; :stressed;
I'm speechless. Just a moment. :pray; :pray; 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!
:waving;
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Bad Ass!
:waving;
:-*
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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
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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!
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:flower; http://www.experienceproject.com/groups/Hate-Kidney-Disease/743052 Here's "I Hate Kidney Disease" going strong with 4 members :cheer:
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Oh and I LOVE FLUFFY CLOUDS!
And I love you!
:-*
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Oh and I LOVE FLUFFY CLOUDS!
And I love you!
:-*
:bow; ZACH
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Love your post Rerun!
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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.
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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.
:rant; ,Cas
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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 :thumbup;
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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.
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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!
:bow;
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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. :waving;
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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.
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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...
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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"
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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.
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^
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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.
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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."
8)
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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.
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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.
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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.
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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?
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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!
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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.
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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?"
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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.
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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.
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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!! :cuddle;
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.
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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. :thumbup;
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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?
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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 :twocents; 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.
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That's interesting, shayron! Yep, it takes all kinds, and that's pretty much who we are! :P
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Membership numbers for IHD are actually quite good considering how passive the majority of dialysis patients are in many ways. Home dialysis is a hard sell no matter which unit in the US and how many incentives they offer. IHD has a wide range of followers, but is skewed greatly to the home dialysis crowd. If you look at it from that perspective, we have captured a large percentage of home patients.
As far as the NKF with a larger membership which is primarily professional, not patient oriented, I must ask, outside of selling out dialysis patients and supporting the dialysis industry, what is it that NKF has accomplished for us as patients? The NKF supports the industry and sadly, even the AAKP likewise even though I am on the medical advisory board for AAKP. The voice of the patient is quite absent in most of these patient groups and the funding by the LDO's is the voice that is heard throughout. Just look and see who these folks honor every year and it is almost 100% top LDO folks.
IHD with 477425 posts, 29400 topics and 9011 members is a very active dialysis support network that I would venture to state is the largest dialysis specific website that is also patient driven. Please name me any other patient driven website for dialysis that does not take industry support that has these stats? NKF is NOT a patient run, dialysis only site. It is largely an LDO propaganda website that derives almost its entire budget from the LDO's. In what way can you compare IHD to NKF?
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I havent had an opportunity to talk with any other dialysis patients in person, so I have not had a chance to recommend the site. But I am part of a discussion group on facebook & so I just asked if anyone else is a member of this site & I am waiting to see. And I can definately understand that some just want to move on with their lives & not join a community like this.
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And I can definately understand that some just want to move on with their lives & not join a community like this.
I can understand this, too!
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Pardon me for poking my bib in, but does our membership of 9011 include those who have gone to God, some of whom we know about and many more, I would think, based on the mortality rates of dialysis patients, we are unaware? How many have not posted for a year, two years, three?
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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.
Why do you feel you have some special insight into why this new member wrote 'sorry, guys....' at the beginning of her sentence? It was her first post, so if she was apologising to the people on this site, then she was apologising based on an INCORRECT assumption that we would somehow take it as an insult. She is not the first person who has expressed this sentiment, that transplant actually made life worse. I HAVE EXPRESSED IT. I may have even apologised or felt I needed to apologise, not to the site but to my doctors and the people who believe in the romance of transplant. My story on paper is just so damned romantic, it's nauseating: boy and girl fall in love, run away together, but then 'oh, no, danger!' girl faces dialysis, boy endures months of physical pain to save girl's life. I couldn't live up to that fiction and I wanted to talk about it with the only people I knew who might understand.
People assume that they know what many experiences are like, transplant being a prime example, even if they've never lived through them. They don't know. It is difficult enough to accept the gift of an organ but to not be able to say that it has transformed your life entirely for the better is an outcome so loaded with guilt, I can see why people apologise. If she thought she needed to apologise to the site, then she obviously didn't do much reading before joining and hopefully she will stick around long enough to see that there was no need to apologise. I strongly believe that people apologise on here because they want someone to notice their feelings of guilt and tell them that it's absolutely fine, they are not the first (in her case, sadly) to feel this way and this site is all about talking about these experiences. When I read her intro I wanted to know more about why she feels she was better off on dialysis - not to try to convince her otherwise, obviously, but to see if there was anything we could suggest to improve her current situation. No one on here wants anyone to feel horrible, whether they're on dialysis, have a transplant, or an unrelated medical condition. To suggest otherwise is hugely presumptuous and insulting.
I personally think that if anything would have scared me off this site, it would have been seeing a blow-up like this one over my very first post. This is quite unfair to this new member who was only following the rules and introducing herself and suddenly people are picking apart her every word and claiming to know what she meant and how she feels.
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.
This is absolutely ridiculous and horrible. Pravda??!! You have not only insulted us, you have minimized the enormous suffering of millions of people who have to live under these brutal regimes. Can you honestly not see the glaring differences between a state-run newspaper where people are jailed, tortured or killed for refusing to tow the party line, and a privately run website with 9000 totally voluntary members??!! If anyone is being authoritarian, it's you - demanding that we change the site name to reflect your experience with dialysis over the wishes of the site owners, moderators, and long-term members.
I have dissented on this site over and over, as have most of the people participating in this discussion. Epoman let an organ broker have his say on this site. I have met his widow who was absolutely lovely and gracious as I was thanking her for keeping the site going. I sincerely hope she is not reading this because seeing what her husband started, and the people that her husband asked to carry on this site, so thoroughly disparaged is clearly an aggravation that she could do without.
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Think about it, if IHD was a name folks were ashamed of, then explain why this site now has over 9000 members?
Actually, 8498 by the site's own stats.
??? I see 9011. Either 500 members have joined overnight (which would be outstanding stats!) or something strange is going on and we are seeing different numbers.
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Actually, 8498 by the site's own stats.
??? I see 9011. Either 500 members have joined overnight (which would be outstanding stats!) or something strange is going on and we are seeing different numbers.
It is what shows up on the home page - www.ihatedialysis.com................
We now have over 466,457 Plus Posts !
28,579 Plus Topics !
8,498 Members Worldwide!
And, BTW, 100,000+ of those posts are attributable to ONE person. (-:
Look at the top of the forum pages on the right side. That gives a tally updated in real time.
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I think the legacy issue involved here pertaining to the founder and his intentions are the relevant factors. It is what it is. My thoughts are that it would be wrong to change the name.
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Hemodoc, I completely agree with your assessment of NKF. For several years, NKF Illinois put on a yearly seminar called "Living with Transplantation". This seminar was well-attended with excellent speakers from the local transplant community (transplant coordinators, SWs, docs, pharmacists). They also had great keynote speakers, including Shad Ireland.
Well, this year, the focus of their yearly seminar changed due to a change in their mission (their words, not mine). The seminar changed to "Living with Kidney Disease". I went anyhow. The speakers were terrible (unprepared, poor speakers, spoke at the audience instead of engaging with the audience, actually gave out half-information/wrong information). The attendance was a third of what it had been in the past. Very few exhibitors and a lot of overall poor planning and execution.
I looked at the back of the program to see who their sponsors were....Fresenius and bunch of drug companies. Hmph. That's all I needed to know right there.
As far as the NKF with a larger membership which is primarily professional, not patient oriented, I must ask, outside of selling out dialysis patients and supporting the dialysis industry, what is it that NKF has accomplished for us as patients? The NKF supports the industry and sadly, even the AAKP likewise even though I am on the medical advisory board for AAKP. The voice of the patient is quite absent in most of these patient groups and the funding by the LDO's is the voice that is heard throughout. Just look and see who these folks honor every year and it is almost 100% top LDO folks.
IHD with 477425 posts, 29400 topics and 9011 members is a very active dialysis support network that I would venture to state is the largest dialysis specific website that is also patient driven. Please name me any other patient driven website for dialysis that does not take industry support that has these stats? NKF is NOT a patient run, dialysis only site. It is largely an LDO propaganda website that derives almost its entire budget from the LDO's. In what way can you compare IHD to NKF?
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I think Davita probably tells patients about their own website. I don't think other centers refer patients to any website. Why would they? They want to be the authority, the source of information. My center never mentioned the internet.
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This has been one heck of a discussion. I questioned whether or not I should give my two kopecks since a) I don't really post much so who cares what I have to say b) I'm a newbie member so who cares what I have to say. I'm late to the party too! :bandance;
Before I registered here, I took some time to read about why the site started in the first place. I read about Epoman's legacy and the fact he felt so censored on "traditional" dialysis sites. While this is my first experience with a dialysis/kidney disease site, I identified with that notion. I was pretty sick of being handed pamphlets and reading material showing happy people and happy cartoon kidneys like dialysis was a champagne party on a yacht. Anytime that I opened my mouth to contest what I was told from doctors or the RSW's, I was labelled a 'troubled patient' that looked to stir the pot. That wasn't the case: I wanted the truth about dialysis. The nitty gritty. The 'not so nice' things to expect.
The day that I found this site, I was in a really terrible black hole. Late 20s, feeling absolutely terrible about my future BECAUSE OF DIALYSIS, all my friends had ditched me and I felt utterly alone. I googled "dialysis support" and this was the first hit back. The name was perfect! It embodied all that I felt! Further, it said, "we aren't being negative, we just hate dialysis" which is how I see it. I started to read post after post and surely, I realized this was not a negative site. There are posts of people sharing life moments like weddings to professional accomplishments, people offering support in times of need, brainstorming to help each other out of issues and general chit chatting that some people need. There are so many different kinds of personalities and viewpoints here that no wonder we would discuss the name yet again. It's really no wonder that we discuss if we hate or love dialysis. That's what makes this community great: even if you want to climb to the highest mountain to scream 'I LOVE DIALYSIS!' someone here would join you! It hardly comes across here that people are snarling and moping all day thinking how much they hate dialysis.
Moreover, this site offers so much patient driven information. If someone wakes up in the middle of the night with a question, someone can answer it or they can find the answer through searching. This even applies to embarrassing questions; someone here has most likely dealt with the same issue! While medical professionals may have information, not all of them know exactly what it feels like to be in our shoes. Had I not found this site and the number of people my age living pretty normal lives on dialysis, I would've kept conservative care as my first option. I have to thank this site for that.
This is just my opinion and I surely haven't studied psychology but I think those that are afraid to say they feel great on dialysis/love dialysis have passed judgement without reading positive posts here. They have internalized that "The majority dislikes dialysis therefore they must dislike my opinion if I like it". That isn't the case! If someone feels great on dialysis [even after a transplant in the example raised], we want to hear all about it! For the people that are scared and wondering what to face, we want positive stories too. We want people to know that their life isn't over and they'll feel better than they did in Stage 4. We can appreciate dialysis and we are thankful for it. However, I honestly don't know anyone that has viewed the news of their kidney failure and subsequent dialysis as positive. Nobody loved to hear that news and if you did, well, you're a strange kind of masochist.
As for increasing member numbers, I don't know exactly if that should be the utmost goal. Remember the old line of "quality over quantity"? Maybe we could have thousands upon thousands of more members but what would be the point if they were not supportive and willing to offer their candid opinions? What would be the point of all these members if they didn't really contribute anything from a hug to camaraderie to scientific information? I am sure that this site as it is appeals to those that will find its value. Besides, think of the people that come by to lurk and find answers to their questions that way. We reach more people than we are aware. They will join and contribute like members in the past have. Sometimes, also, it is good if members do not post rampantly. It could mean they are off enjoying their lives and not focusing on their ESRD. In a perfect world, we wouldn't need IHD or any other site where people seek support.
So, in the end, I don't have a problem with the name. We should remember Epoman's legacy and reasons why he chose the name. "IHD" has pop to it, anyways! It takes only a few minutes here to see this is a sympathetic group of people willing to help out each other. Everyone is welcome here and I surely don't want any members leaving.
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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....
Obsidianom -
For the most part I agree with your sentiments. However, I'm also disheartened that you feel so strongly and negatively about the site moniker and some who disagree w/your POV that you find yourself uncomfortable continuing to regularly visit and post Many on here (myself included) value and appreciate your input. Your caring nature is quite apparent by the time and thought put into your advice and words. And, I believe on some level you are receiving needed "nourishment" from here as well.
None of us are immune from saying things we truly don't mean in the heat of the moment. It's human nature! And, I'm hoping this is the case with your stated intention of withdrawing from the site. I for one will miss not having you around.
My best to you and your wife as you both continue Life's journey. - NoahVale
Well said, NoahVale!!
UkrainianTracksuit, it doesn't matter for how long you've been an IHD member; your opinion is just as valid and appreciated as anyone else's.
Cariad, your post should remind everyone that while transplant is marketed as the end all and be all, it does carry risks and can be disappointing in the long run, so thank you. We all remember the horrors that befell smcd23 and her husband Tony!!
I can't help but wonder why our new member felt like she had to apologize. We won't know unless she tells us. This is ENTIRELY SPECULATION, but I wonder if the apology sprang from a sense that if you don't like your transplant, and considering all of the people on dialysis who dream for YEARS of getting one, then you are ungrateful for the gift you got, for the freedom you got, and you should apologize for that. You're off dialysis, so you shouldn't complain. Maybe SHE doesn't feel like this, but perhaps other people do? Hmmm...
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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.
This is absolutely ridiculous and horrible. Pravda??!! You have not only insulted us, you have minimized the enormous suffering of millions of people who have to live under these brutal regimes. Can you honestly not see the glaring differences between a state-run newspaper where people are jailed, tortured or killed for refusing to tow the party line, and a privately run website with 9000 totally voluntary members??!!
WHOA WHOA WHOA... I went over this whole thread and I missed the mention of Pravda until now? :o I cannot and will not let such a mention go un-laughed-at.
*sigh* My birth certificate says Soviet Union. If you check my place of birth, it's identified as Soviet Union. The beginnings of my life were in the Soviet Union (and Soviet education system!) Most families have a member that did hard time for stupid reasons during the Soviet Union. The Pravda comment didn't rub me the wrong way at all.
But...
I just HAD TO make a post about Pravda. It's the laughing stock of newspapers now. In financial troubles and put out only 3x a week (like in center dialysis, I know, I know.. bad joke). So, just because there is one major voice overpowering comments, it doesn't mean it will last forever. People wise up and make their own decisions. Now, I must go read Pravda and all the ridiculous stories it shares! :clap;
[Sorry, please return to your regularly scheduled discussions. I don't want to cause any harm!]
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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 can't tell you why exactly they have this opinion but the name doesnt help.
Hi obsidianom,
What site do the nurses and social workers at your clinic recommend to their patients?
Thanks.
--Zach
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Look at the top of the forum pages on the right side. That gives a tally updated in real time.
Thanks for pointing out the location of real time stats on the forums page. However, an additional 500 members out of the total number of US and worldwide esrd population doesn't change the gist of my viewpoint and statement. So instead of 1.5% on here, now maybe 1.8%. Plus Galvo made a good point - are deceased members still counted in the total?
Membership numbers for IHD are actually quite good considering how passive the majority of dialysis patients are in many ways. Home dialysis is a hard sell no matter which unit in the US and how many incentives they offer.
So what are you suggesting or inferring?
Is you glass half full or half empty. IHD is a very active site and I believe the largest patient site that has no industry support. If you have other information that differs with that conclusion, I am all ears. But my impression is it is the largest patient driven site out there.
Why shouldn't they count deceased members? In fact, their legacy continues on this site as well. It is not only Epoman's legacy that IHD continues. If folks don't like this site because of it's name, do you really think a name change will gain thousands of new members? No, it is the content of this site and the free and open and uncensored voice it provides that is the attraction. Where else do you have an uncensored site, except of course for inappropriate remarks and spam that is? That was the goal of Epoman and that is still his legacy. In addition, how many on this thread alone have to state that they found IHD by a google search "I hate dialysis," voicing their sentiment of how they feel about dialysis. Shucks, this thread is getting a bit silly I think.
Yes, dialysis patients in general are quite passive in the US. If you look at Scribner's organization he started in the 1960's, Northwest Kidney Centers, they have an incredible outreach to all of their patients, they offer trial of daily dialysis in-center so people understand the benefits of dialysis dialysis and still they only have a small percentage of patients who choose home hemodialysis that I believe reaches the level of 10% the last time I heard. Compare this with New Zealand that has the majority of it's patients on home treatments whether HD or PD and over 25% on HD at home. Yes, the US dialysis population is not anywhere near as proactive a dialysis population as overseas for sure. The fact that only about 10% of our population participates in self care of one modality or another is a testimony against us certainly and one that is not overcome by aggressive institutional promotion of home therapies such as at the NKC.
In addition, the majority of patients on dialysis are in their 60's and 70's and is not a generation know for internet savvy at all. so what is the percentage of dialysis patients who even look on the internet on a regular basis? I don't know that answer to that, but I would suspect it is a quite low figure to begin with.
So, 1.5% or 1.8% of the total population, what level is a level of success? I don't have that answer either, but if IHD is indeed the largest patient dialysis site, they what of all the other site's and how they are fairing especially with large budgets from industry sponsors? Sorry, but IHD is just fine as a name and doing just fine as an organizations created and supported by volunteers.
If folks believe that they can do better than Epoman, I am sure they are welcome to do so. His legacy continues and I suspect will continue for quite some time with it's current name. Just because the industry does not promote an independent patient site that is often quite critical of that industry, is that really a surprise to anyone at all? Not to me.
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Perhaps a name change for all of these forums as well would bring in thousands of members.
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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.
This is absolutely ridiculous and horrible. Pravda??!! You have not only insulted us, you have minimized the enormous suffering of millions of people who have to live under these brutal regimes. Can you honestly not see the glaring differences between a state-run newspaper where people are jailed, tortured or killed for refusing to tow the party line, and a privately run website with 9000 totally voluntary members??!!
WHOA WHOA WHOA... I went over this whole thread and I missed the mention of Pravda until now? :o I cannot and will not let such a mention go un-laughed-at.
*sigh* My birth certificate says Soviet Union. If you check my place of birth, it's identified as Soviet Union. The beginnings of my life were in the Soviet Union (and Soviet education system!) Most families have a member that did hard time for stupid reasons during the Soviet Union. The Pravda comment didn't rub me the wrong way at all.
But...
I just HAD TO make a post about Pravda. It's the laughing stock of newspapers now. In financial troubles and put out only 3x a week (like in center dialysis, I know, I know.. bad joke). So, just because there is one major voice overpowering comments, it doesn't mean it will last forever. People wise up and make their own decisions. Now, I must go read Pravda and all the ridiculous stories it shares! :clap;
[Sorry, please return to your regularly scheduled discussions. I don't want to cause any harm!]
No harm caused! However, he did write 'the old Soviet Union Pravda' which I was alive to see in action (as was Obsidianom), and my father being a publisher for most of my life, it was certainly discussed in my household. So while Pravda may be little more than a crumbling mess now, it retains its symbolic power and new media has taken its place and continues to suppress truth and instill fear. Did you watch the video of that woman quitting Russian television live on air, probably because she wanted to retain some shred of self-respect? I don't think the voices in charge actually change that much, it's just different people. Kim Jong-un replaces Kim Jong-il, and there is hope for a moment - He's young! He was educated in Europe! He's met actual Americans! - but then he kills his uncle and we all come to realise it's business as usual.
When I was a kid, our housekeeper was more of a mother to me than my own mom, and a voice of sanity for a crazy childhood. Her sister, her only family, was trapped in East Berlin and C. could not really have any relationship with her. I remember the rule was that her sister could leave once she was in her 60s (how's that for sending a clear message that older people don't matter?!) and I was haunted by this situation. One night when C. had left for the day I burst into panicky tears and could not explain why. I still don't really know why it hit me so hard that night, I just couldn't make sense of the situation at that age. The intent based on what Obsidianom wrote was to compare us to some fascist regime, and I DO NOT appreciate that in the slightest. This sort of comparison actually means something to me, brings up real memories of real people in my life. I think to so casually throw a reference like that out there when he (like most of us) has no real idea to whom he is speaking, is completely uncalled for. But it's great you got a laugh out of it, 'cause I certainly didn't.
This site means something to me, for good or ill it has changed my life. There is no other place like it on the net, and I don't want to see it altered, especially not that brilliant name.
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But it's great you got a laugh out of it, 'cause I certainly didn't.
I understand that this is a "name change" thread and I should by no means change the direction. I apologize and I will make it my word to not stray this thread any further after this post. Like I said, Pravda was mentioned on the threat and it caused a giggle. Previously, I stated I liked the name of IHD and all the positive aspects of this site.
Cariad, yeah, I found humor in the Pravda comment because it was absurd. Most people don't understand Russian humor, as it is strange, and that's all. I also found it absurd that a comparison would be raised on this website and I found it absurd that a simple line like that turned into almost an inflammatory comment towards Obsidianom. Anyone who has wanted to has said their peace on this thread about a name change and wear their hearts on their sleeve. While we can have different opinions, sometimes, it takes a little respect and tact on both sides. Nobody should be censored but members shouldn't feel they need to leave [personal feelings or not] because of the way discourse is presented. So, when all else fails, lighten the mood. For my PhD, I interviewed quite a few gulag survivors and when things would get really heavy on my part [heavy as in emotional and sad], they would remind me they at least had freedom of speech because they had nothing left to lose. Even THEY lightened the mood and they'd actually been through hell on earth in an authoritarian regime.
I'm quite aware about the history of Pravda. And while we're at it, I also know the history of Trud, Izvestia and Bednota! Over here in Russia, what happened with the presenter on RT was viewed as a publicity stunt for her own benefit. I am aware RT shaded it to suit their interests but honestly, there are much bigger issues with censorship and freedom of speech here at home. Again, the RT issue was a laughable matter when seriously simple journalists are having their offices raided, thrown in jail and livelihoods taken away. I would never see humor in that but I see it at RT.
Well, you gave your history as to why my joke was insensitive. I respect that and your feelings. How about you see where I am coming from too? Let's see, my father's brother was sent to a gulag and "died" at the age of 33. And why was that? Not because he wasn't Communist enough but rather he was TOO far left. My father still talks about him everyday and keeps a little shrine. My great-uncle Gennady lost his leg from the knee down due to unsanitary conditions in the camps. Why was he there? He handed out a few "Lenin would be unhappy with us" pamphlets. He tells the actual horror stories of guys reverting to animal behavior to survive. I'll probably ask him if my statement here was inappropriate when I visit him in Stavropol next weekend. He makes jokes all the time too. My father was in the Soviet military, where he saw a lot of gnarly things, and everyone in the household had to listen to his night terrors for years. [Probably why I suffered from insomnia as a child..] My grandfather retired as high ranking member of the military, still believes very strong in Soviet rhetoric and many of his views are authoritarian. So, quite frankly, I understand the seriousness of the authoritarian regimes. You didn't need to assume that I think the whole situation is one giant giggle or perhaps I'm too young to know anything. I'm not going to dwell on the darkness because I'd forever have to hate who I am, my "actual" roots and live in guilt. So, I laugh at the odd things I can find humor. If that is the sad state of a once glorious newspaper, I'll take it. If people make absurd statements, it's a natural process to laugh.
I think that's the thing with this website and the name: First, it comes with the variable of "hate". But, we don't dwell on the darkness here as we help each other and offer support. We take a very serious matter and see light at the end of the tunnel.
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Well, you gave your history as to why my joke was insensitive.
UT, I think there's been a misunderstanding. I was not in any way saying that your post was insensitive. I was explaining why I do not take what Obsidianom said as a harmless joke, it really had nothing to do with you. This is why I wish people would not assume that they understand what the other person is trying to say - when I said it was great that you found it funny, I meant for it to be taken at face value. Just as I started with 'No harm caused' I did really mean that. Just as a tip, for me at least, I try to leave as little room for interpretation as possible. If I found you insensitive, I would probably tell you directly. :)
I have a confession to make. I have had a long and confusing day and am totally knackered, so I skimmed your post and stopped reading when I reached the quote above, the moment I realised that this was all in reply to miscommunication. You obviously put a lot of thought into the reply and I *will* read what you've written with interest, just not today. I find your posts interesting and unique and as an anthropologist, your insight into a culture I've never given much thought to is fascinating to me.
On a general note to everyone, I feel I am misunderstood frequently on this forum. It's really frustrating. It feels like battling a hydra, because no sooner do I think I've clarified something, I find the further explanation leads to little illumination and even more assumptions and misunderstanding. I have heard others express this same frustration. I once read the advice (on here!) that if there are two ways to take someone's statement, choose the nicer one. I would add "or ask for clarification". It would probably save us all loads of time.
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*
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Perhaps a name change for all of these forums as well would bring in thousands of members.
Home Dialysis Central is set up for those who are on home dialysis. By using your own reasonong from above, given the number of patients utilizing home treatment in the US, HDC's stats are really good. (Not)
Same can be said about NxStage's yahoo site. A highly niche market within the esrd population.
Also, how long have the other sites been around? IHD forums started 9 years ago.
No problem Noahvale. I have nothing more to add. IHD remains the largest dialysis/ckd/transplant support forums out there. The other sites are woefully less in membership compared to IHD and they have very user friendly names. HDC and HDU are quite inclusive and both have forums. No one has as active a forum as IHD and that is without any LDO support as you have noted or industry support. Epoman did a good work.
Have a great day, not much more to be said, the numbers speak for themselves. IHD is the largest forum for dialysis out there. Is it the name, I don't think so. In any case, I have nothing further to add. Take care.
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^
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Dear Noahvale, what credible evidence do you have that a name change would improve membership for IHD. I contend that there are several sites with woefully less members but very user friendly names. Dialysis unfortunately is not of much interest compared to many other websites on other topics. I belong to one that has nearly 50,000 members and over a million posts in about 5 years. There is only a fraction of dialysis patients in the US who utilize self care in the US and exercise independence for their own disease. Yes, it is indeed a very passive group compared to other patients with breast cancer or heart disease for instance. That was my impression as a doctor caring for all of these groups while practicing and it is even more noted since I started dialysis and learned of the deficiencies of the American system.
As an advocate, I wish dialysis patients were easier to motivate, but that is not the case unfortunately. The one thing we all hold to is the universal suffering we all experience. If there is negativity about dialysis, it is not in any manner due to IHD and it's name. Instead, it is the dire practices in our for-profit system instead and the profoundly negative view that nephrologists , nurses and technicians have about their own patients. Overcoming the great disinterest in dialysis and better ways of doing dialysis is a systemic problem that even Scribner failed to overcome.
As far as internet savvy, are you really going to argue that the average grandma in her 70's is more savvy than say a 15 year old kid in high school? Get real Noahvale. Any way that was a good chuckle. Here for some facts on internet usage in general:
http://www.pewinternet.org/data-trend/internet-use/latest-stats/
Now, are you also accusing me of being a Chicago, left wing democrat. One more good chuckle. No, old folks are nowhere near as connected as the young kids. I am 55 and most of my friends are in their 60's and 70's and only a few of them use the internet at all and NONE of them, including me has one of those "smart" phone contraptions. I did just buy an iPad because my lap top quick a couple of weeks ago. It has no phone access, just wireless and does almost everything my laptop did so for now, that is all I need, but an iPhone, what for? All I need is an old fashioned phone to talk to people. In fact, I have never once texted to anyone at any time. If I want to connect with someone, I send an email if at home or call.
Now, nitty gritty details. If you are going to change the name, will you also change the URL since that is simply www.ihatedialysis.com? If so, then you would essentially start a new site and yes, Epoman's legacy would be gone. Do you know that I have seen several threads started by Epoman that people still comment on from time to time? Isn't his voice still active in that way alone?
No, what you are proposing does great dishonor to Epoman and what about all the other members who still have threads going today and thus are remembered and missed greatly? Sorry, but your argument lacks any weight of evidence as all the other sites with "great" names are doing far worse than IHD. Where are these 10 of thousands of patients who can't access our site today? In fact, it appears that there is a large percentage of people who found IHD because of the name alone.
If you want to be semi-scientific about this, then let's take an unofficial poll on IHD and see how they found the site. Then let's revisit this issue. My suspicion, the biggest demographic drawing folks to IHD will be IHD itself.
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Take the poll. If you see other choices that I did not list, please comment and I will edit the poll. Cheers.
http://ihatedialysis.com/forum/index.php?topic=30986.0
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On a general note to everyone, I feel I am misunderstood frequently on this forum. It's really frustrating. It feels like battling a hydra, because no sooner do I think I've clarified something, I find the further explanation leads to little illumination and even more assumptions and misunderstanding. I have heard others express this same frustration. I once read the advice (on here!) that if there are two ways to take someone's statement, choose the nicer one. I would add "or ask for clarification". It would probably save us all loads of time.
When it comes to dealing with people, our facts are socially constructed. We shade and colour them according to our views. I understand that points, especially on the internet, can be misunderstood as we view from our own lenses. Therefore, I apologize for my contribution to the misunderstanding. Cariad, I know now and in the future, to take your comments for face value. That is good to know. I still stand by my giggling though. :angel;
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let me start by saying i havent read the entire thread so no clue whats already been said and all that jazz but i thought id add my two cents
As far as a name change, I think I love the site name. It gets people's attention, whether good or bad, its being talked about....
I know some places dont allow it to be mentioned through them, because its policy. legal issues, we arent professionals, and if something happened because of our advice blah blah blah
but there is nothing stopping you from telling a fellow patient about it personally. I do it all the time, infact the mother of a patient i wrote a note to telling him about this site was so thankful she got me a sweet card with a gift card inside. (i couldnt believe she was so thankful for a simple note saying hey, man, i know this can be rough, if you ever need an ear, im here, also theres this site, etc... it took no time out of my day to extend my aid to him)
I dont know if anyone ive told about this site has ever joined, but i know quite a few have checked it out, so have some techs ive mentioned it to. One tech said she feels like she has gained a lot of patient insight by coming here and reading about patients struggles...
Most people laugh at the name around these parts lol because who wouldnt hate it?? its one of those things you love and hate at the same time i guess... i do love that its available and keeping me alive to watch my son grow, meet an amazing man and marry him (something i never dreamed possible!) but i absolutely hate it. I hate that I have to do it, i hate that i feel like crap all the time, i hate that my arm looks the way it does.... etc etc etc but im SO thankful I am alive, and so thankful that IHD exists.
i found this site just surfing trying to gain info on dialysis because i knew nothing about it. my own dr didnt prepare me for it at all. he sent me a letter after a lab draw saying nothing but "will need fistula soon" i didnt even know what a fistula was when i got that, so it was a rather large shock to learn i would be getting one and doing this dialysis stuff... I had a rather crappy experience in the begininng of this journey....
I found IHD, I laughed when I first saw the site. (and thats typically what people I tell about the site do too) It fairly well sums up how I feel NOW about dialysis, I DO hate it, but I also accept it, and in my own weird way im kind of thankful for it. (not kind of, I AM, but i hate it.) I am sure everyone hates the idea of having to do this, no matter how positive they are, no one wants to do this, but we "have" to. It took me a long time to be the kind of person who can find the silver lining in just about anything. I owe a large deal of that ability to my kidney failure. And if it werent for diaysis, I wouldnt have found this site, and without this site, I would be completely alone.
I want to explain why I said I would be completely alone. (Because most of you probably know enough about me, im a mom, and a newly wed, and i do have family members i see regularly)
I have people I could potentially talk to about all of this but 1. they dont understand, and the ones that try to understand cant fully truly understand, because they havent been there... 2. I dont WANT to talk to them about this. I know that my feelings sometimes border on a 'bad place' because my health blows, and im tired of being so sick all the time. i try very hard to stay positive, and the people here really do help in so many different ways.
Wow I will stop typing now, if anyone made it to the end, i thank you and hope it wasnt tooooo run-on! lol
<3
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Well said, gothiclovemonkey
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I do want to comment a bit further on this because, as promised, I've now read it, and I find talking about how people come to understand or misunderstand each other fascinating. I could have, of course, worded my original message that kicked this all off more clearly. I was rushed yesterday and should not have even been on here in the first place. I guess my only trouble with your message. UkranianTracksuit, was that I heard a suggestion that I shouldn't take this seriously because you didn't. So if you heard any defensiveness in my post, that was what was behind it, and yes it was a silly assumption on my part and I apologise for making it.
Cariad, yeah, I found humor in the Pravda comment because it was absurd. Most people don't understand Russian humor, as it is strange, and that's all. I also found it absurd that a comparison would be raised on this website and I found it absurd that a simple line like that turned into almost an inflammatory comment towards Obsidianom. Anyone who has wanted to has said their peace on this thread about a name change and wear their hearts on their sleeve. While we can have different opinions, sometimes, it takes a little respect and tact on both sides. Nobody should be censored but members shouldn't feel they need to leave [personal feelings or not] because of the way discourse is presented. So, when all else fails, lighten the mood. For my PhD, I interviewed quite a few gulag survivors and when things would get really heavy on my part [heavy as in emotional and sad], they would remind me they at least had freedom of speech because they had nothing left to lose. Even THEY lightened the mood and they'd actually been through hell on earth in an authoritarian regime.
Well, no one should be censored up to a point. There are statements that are well out of bounds. This is first and foremost supposed to be a safe place to discuss feelings, but it doesn't come across that way when someone accuses us of being like Pravda because we won't turn this into the site that he wants it to be. He was not being censored, obviously, he stated that it was his decision to no longer participate. He's an adult and can make his own choices, but it was his choice, no one forced him to leave.
I find what you say about gulag survivors incredibly interesting. I actually worked as a researcher on a documentary about Germans living in my area, and how they contributed to the town. Sounds benign enough, but of course Germans of a certain age living in America have some awful stories to tell. If they wanted to joke about it, fabulous, I can go there with them, but I would never take the initiative. For me, I feel it would have been inappropriate, and that is not to say that you acted inappropriately if you did initiate jokes, I'm sure you did a phenomenal job with your research.
I'm quite aware about the history of Pravda. And while we're at it, I also know the history of Trud, Izvestia and Bednota! Over here in Russia, what happened with the presenter on RT was viewed as a publicity stunt for her own benefit. I am aware RT shaded it to suit their interests but honestly, there are much bigger issues with censorship and freedom of speech here at home. Again, the RT issue was a laughable matter when seriously simple journalists are having their offices raided, thrown in jail and livelihoods taken away. I would never see humor in that but I see it at RT.
I'm not surprised that Russia gave a very different account of the incident at RT. Do you live in Russia or Canada, or both? I thought I remembered Canada from your intro, though I certainly knew you came from a Soviet background and are multilingual. I actually have a very dark sense of humour, and with my numerous illnesses and a lifetime of ESRD, I do enjoy my share of gallows humour. I would not, however, engage in that type of humour here because I cannot control who will read it and unless you know me, you could think that I was laughing at the very real problems that people face on here and throughout the world.
Well, you gave your history as to why my joke was insensitive. I respect that and your feelings. How about you see where I am coming from too? Let's see, my father's brother was sent to a gulag and "died" at the age of 33. And why was that? Not because he wasn't Communist enough but rather he was TOO far left. My father still talks about him everyday and keeps a little shrine. My great-uncle Gennady lost his leg from the knee down due to unsanitary conditions in the camps. Why was he there? He handed out a few "Lenin would be unhappy with us" pamphlets. He tells the actual horror stories of guys reverting to animal behavior to survive. I'll probably ask him if my statement here was inappropriate when I visit him in Stavropol next weekend. He makes jokes all the time too. My father was in the Soviet military, where he saw a lot of gnarly things, and everyone in the household had to listen to his night terrors for years. [Probably why I suffered from insomnia as a child..] My grandfather retired as high ranking member of the military, still believes very strong in Soviet rhetoric and many of his views are authoritarian. So, quite frankly, I understand the seriousness of the authoritarian regimes. You didn't need to assume that I think the whole situation is one giant giggle or perhaps I'm too young to know anything. I'm not going to dwell on the darkness because I'd forever have to hate who I am, my "actual" roots and live in guilt. So, I laugh at the odd things I can find humor. If that is the sad state of a once glorious newspaper, I'll take it. If people make absurd statements, it's a natural process to laugh.
We already discussed how this turned into a giant misunderstanding when I was trying to briefly touch on why I found the original statement from Obsidianom insulting. It is because we share broad similarities in our background. We are both American, both old enough to have lived through a far more naive time when Russia was our worst enemy (with no one really challenging that notion), and both know perfectly well that Pravda was once a symbol of evil. And again, the current state of Pravda is not really relevant to me. He could have said we were becoming like Nazis or North Korea, it would have been the same message. It wasn't meant to speak to your background at all, and since I only have a vague idea of your age and don't like discussing mine on the internet, I wouldn't claim you are too young to know anything. My kids show the ability to understand issues much more profoundly than I could have predicted, so obviously a well-educated, well-traveled woman such as yourself will know much more than you could ever put down on an internet forum.
Thanks for sharing a bit about your family's history. It is incredibly sad and scary. I know I would have found it terrifying as a child. Then again, I found most things Russian/Soviet terrifying as a child, for the reasons I briefly touched upon above.
I think that's the thing with this website and the name: First, it comes with the variable of "hate". But, we don't dwell on the darkness here as we help each other and offer support. We take a very serious matter and see light at the end of the tunnel.
Ah yes, the topic! ;D
One day when trying to access the forum, because of the mysteries of my mobile, I wound up on a site called 'I hate nursing'. I read everything I could find on that site. It was hilarious - yes there were very serious issues being discussed, people who tried to devote their lives to helping in medicine and instead feel they are treated like garbage and now feel trapped in a job they despise, but the humour was wonderful. But of course, as many pointed out, it's not the nursing that they hate, it's all the crap that comes with it. (Well, some just hated every bit of it, and they are entitled to their feelings.) It was a great window into how American (most were American) hospitals and other medical clinics operate and treat their staff. I have had to rely on nurses for LOTS. It did not upset me to see what many really thought of the job, and I didn't find them ungrateful for having any kind of job in the American economy. They were just discussing feelings. It's great that they have a place to do that, as do we.
I am still glad you got a laugh out of Pravda! I do agree with you that one should find laughter wherever one can!
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Cariad,
I "moved" back to Russia early this year (early January). I don't consider it permanent but it needed to be done. After my doctors for years said it wasn't a good idea, I spent a couple weeks in E. Europe in the past autumn and gosh, I didn't die. I needed to just "re-energize" by seeing relatives [and now, "educating" my aunt here about her HD.. can never run away from it!], old friends and old places. I hope that's enough clarification.
I thank you for your reply. You didn't have to and you kept your word. Anyhoo, I would make this point clear: I would never find humor in actual people's experiences. By raising survivors' experiences, I was not saying 'laugh with them' or 'laugh at them', rather, it was their perspective that if they wanted to keep hope, they also had to find the light side. Trust me, there were a lot of tears too. It was a very important lesson. Only in material things like a newspaper or a silly information ministry that were so hopped up by propaganda do I find humor. Had it been North Korea or past fascist regimes mentioned, you're absolutely right, there would be no humor. [Unless we're talking about bad haircuts and ridiculous ideologies] As for your assumption, I wasn't trying to put across how 'you' should feel. :) Let it be known, I would never try to force feelings on people. It was simply the general absurdity. I just couldn't get over the reference, honestly. All I could do was laugh when I'm reading along and pop! There's Pravda! I guess I should've replied, "In Soviet Union, dialysis hates you!" When all fails, Russian reversal is the answer. :P
As for the topic at hand, your point about the nursing forum is what most been saying here [as you know!]: It's not the dialysis we hate, it's all the crap that comes with it. It's good you shared that on a thread mentioning "hate" in a name. I've always believed that hate is a variable. Yes, it's a strong term but it can be both positive or negative depending with what it's aligned. If you hate something negative and with negative connotations, it's positive. [Example: I hate racism, I hate despots, I hate homophobia, I hate bananas.] We're all thankful dialysis keeps us alive but we hate the damage its caused, lives it has taken, the sometimes 'forks in the road'. Previously you stated you aren't so keen on sharing your age and I understand that. However, for me, to find members here around the same age was such a relief. This terrible disease and its replacement therapies affect members in all age groups but I didn't "know how to live" at this point in life where big decisions have to be made. It's so easy to say, "Keep a positive attitude!" but not when you have a career or responsibilities on the line. When I noticed the forum's activity level and the variety of members, I realized this place could do nothing but help. Currently, it's been great to provide information to local patients. I ask permission and I translate simple things about the standards of cleanliness to diet information. I've googled after joining this forum and there are forums relevant to my location but a) they aren't too active all the time b) some of the information shared is one big WTH c) there's always some clown trying to sell an organ (It's not your typical 'i sell you kidney!' but more sophisticated) d) I become really sad hearing about patients unable to get a hold of medicines and dialysis supplies. Another thing is that there isn't much help directed for 'caregivers' anywhere like on here. It seems as though, as caregivers, all of our experiences mesh and those times when we have "ARGH!!!" moments, we are not alone and others understand. My boyfriend is surely not my caregiver but I wish so much he understood a snippet of English so he could read posts here. It would take out so much fear of the dialysis process, my ugly new graft and fearful thoughts of invalidity and death. Transplants are not my experience nor is one in my path but I am extremely happy when people receive one. It's super also that there are many recipients here too to share their experiences through the process, the follow ups and enjoying life. All in all, from lurking on relevant groups for my area, it was a depressing experience and I didn't want that at all. In the end, I feel that this forum has the most active and best educated patients or members offering help. This site could've been named "Dialysis is the gateway to Hades" and I'd still join. I know the saying is "it's all in a name" but in this case, it's not. The name is part of it but the site has become SO much more.
To sum it all up, can we in general find different authoritarian examples in the future? Like errrr, "this place is becoming strict like a bald eagle at the top of a filing cabinet!" Sorry, bad idea, I guess IT IS easier to just pick blazing obvious examples from history. Either way, it's just as odd. Lastly, I wouldn't change a thing about this place. I just want everyone to get along if they agree or not. :flower;
Cariad, I apologize again for the long reply. I hardly get to "express myself" when it comes to this sphere so I get taken away. Good thing it's dinnertime to stop me! ;D
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This site could've been named "Dialysis is the gateway to Hades" and I'd still join.
"Dialysis is the gateway to Hades."
That's got my vote!
>:D
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This site could've been named "Dialysis is the gateway to Hades" and I'd still join.
"Dialysis is the gateway to Hades."
That's got my vote!
>:D
Zach, Zach, Zach :boxing; :clap; :2thumbsup; :yahoo;
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*
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This isn't even semi-scientific because the wrong people are being polled. Survey question should be "why have you not signed up to become a part of IHateDialysis.com" with reply options and sent to the 10s of thousands who aren't members to have any meaning.
Great, do you have a grant I can use to do that scientific poll per chance? Also, do you have another grant to find the people who did NOT sign up for for IHD so that I can survey with the first grant those that are the right people to poll with the second grant so I can find them? Sorry, that is just silly Noahvale. If you wish to do that "scientific" study, that is certainly your prerogative, but I think I will pass on your suggestion myself.
The poll is actually quite interesting aside from the whole name change issue. It will live on and perhaps even after I am dead and gone, I suspect IHD will still be here and my poll will live on. Yes, that will be my legacy as well as long as they don't change the IHD name and kick out the dead members that is.
Cheers
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"In Soviet Union, dialysis hates you!"
Oh my God! This is utterly brilliant and hilarious!!! I heard the Russian accent when reading that! If we cannot agree that this site name *must* be changed to "Dialysis is the gateway to Hades" surely we all can see the wisdom in starting DialysisHatesYou.com :rofl; :rofl; :rofl;
As for the topic at hand, your point about the nursing forum is what most been saying here [as you know!]: It's not the dialysis we hate, it's all the crap that comes with it. It's good you shared that on a thread mentioning "hate" in a name. I've always believed that hate is a variable. Yes, it's a strong term but it can be both positive or negative depending with what it's aligned. If you hate something negative and with negative connotations, it's positive. [Example: I hate racism, I hate despots, I hate homophobia, I hate bananas.] We're all thankful dialysis keeps us alive but we hate the damage its caused, lives it has taken, the sometimes 'forks in the road'.
This is an elegantly simple point you've made, and one that I never would have thought of - yes, there are indeed times when hate is the most positive reaction one can have. Thanks for this, it brings a fascinating new angle to the discussion.
Previously you stated you aren't so keen on sharing your age and I understand that. However, for me, to find members here around the same age was such a relief. This terrible disease and its replacement therapies affect members in all age groups but I didn't "know how to live" at this point in life where big decisions have to be made. It's so easy to say, "Keep a positive attitude!" but not when you have a career or responsibilities on the line. When I noticed the forum's activity level and the variety of members, I realized this place could do nothing but help. Currently, it's been great to provide information to local patients. I ask permission and I translate simple things about the standards of cleanliness to diet information. I've googled after joining this forum and there are forums relevant to my location but a) they aren't too active all the time b) some of the information shared is one big WTH c) there's always some clown trying to sell an organ (It's not your typical 'i sell you kidney!' but more sophisticated) d) I become really sad hearing about patients unable to get a hold of medicines and dialysis supplies. Another thing is that there isn't much help directed for 'caregivers' anywhere like on here. It seems as though, as caregivers, all of our experiences mesh and those times when we have "ARGH!!!" moments, we are not alone and others understand. My boyfriend is surely not my caregiver but I wish so much he understood a snippet of English so he could read posts here. It would take out so much fear of the dialysis process, my ugly new graft and fearful thoughts of invalidity and death.
Again, I have no experience with this interesting culture you inhabit, and it is amazing to get to read this sort of insight on it. You seem to negotiate the two cultures effortlessly, which I think is an extraordinary and extraordinarily rare trait. I had no idea your boyfriend doesn't speak English. That would seem to put quite a few difficulties in your path, not understanding anything written on IHD being one of them. Perhaps Google Translate will improve one day, but the translations into English from other languages frequently make almost no sense. It's great for the odd word here or there, though. My husband speaks Welsh (yes, it's as useful as it sounds!) but there are no monolingual Welsh speakers left in the world, so thankfully he is entirely fluent in English as well.
Transplants are not my experience nor is one in my path but I am extremely happy when people receive one. It's super also that there are many recipients here too to share their experiences through the process, the follow ups and enjoying life. All in all, from lurking on relevant groups for my area, it was a depressing experience and I didn't want that at all. In the end, I feel that this forum has the most active and best educated patients or members offering help. This site could've been named "Dialysis is the gateway to Hades" and I'd still join. I know the saying is "it's all in a name" but in this case, it's not. The name is part of it but the site has become SO much more.
Cool, so we can look forward to years of your posts! I do believe that something better than transplant is on the horizon, so I wouldn't be surprised if you will eventually be off dialysis.
To sum it all up, can we in general find different authoritarian examples in the future? Like errrr, "this place is becoming strict like a bald eagle at the top of a filing cabinet!" Sorry, bad idea, I guess IT IS easier to just pick blazing obvious examples from history. Either way, it's just as odd. Lastly, I wouldn't change a thing about this place. I just want everyone to get along if they agree or not. :flower;
The getting along bit is a noble goal, but tempers do flare and I don't think we'll ever completely eliminate the spats. I just want to find ways to work "this place is becoming strict like a bald eagle at the top of a filing cabinet" into my everyday conversation. ;D
Cariad, I apologize again for the long reply. I hardly get to "express myself" when it comes to this sphere so I get taken away. Good thing it's dinnertime to stop me! ;D
I enjoyed every word. You have a delightful sense of humour!. Keep the posts coming, please!!! :)
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Why change something that is obviously working well? I spent time at several kidney disease forums, reading carefully and sizing them up before I decided to register. For the most part they were all pretty disappointing. I come here because it is active, there are a variety of points of view, and most posters are very respectful of each other. When I have a problem, I always try to find others who have been through a similar situation and have found constructive ways to deal with it. I find that here. The name is an eye-catcher, to be sure, but anyone who is sincerely looking for good information and support will take the time to find out the real character of the board and its posters. The strength here is in the people who contribute, not in the name.
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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.
Some, like Mr Ford was , any color you want, as long as its black. :rant;
Agree though that once in a while its OK to take a look at all the options available. ::)
I vote for keeping the name as is. :yahoo;
talker
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For those who don't understand why Epoman named this site, I Hate Dialysis, please read his post and the attached arcticle:
http://ihatedialysis.com/forum/index.php?topic=922.msg9301#msg9301
An excerpt from the interview with Bill Halcomb (Epoman):
“The corporate boards are very moderated,” he said. “They delete posts, edit posts, and it made me feel silenced. I got fed up with it, and said ‘…I’ll just start my own board.’
“The next step was to decide on a name for the site. Lots of sites start, but never get off the ground, so I wanted something that would shock people, but also interest them, and that’s where the name comes from.
“Hate is a strong word, but it’s true. I am grateful for dialysis and will kiss the ground the creator of dialysis walks on, but I hate living with it, and I hate what it does to my body and how it makes me feel.”
Very interesting reading.
8)
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Very interesting reading indeed Zach! Thanx
Love, Cas
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Thank you, Zach, for finding that article and sharing it with the rest of us. It has made me really sad that some of the people interviewed are no longer here. While I knew why Epoman named IHD as he did, I guess it really never hit home until I read it in his own words.
Perhaps this thread should be stickied as there will inevitably be another discussion of this issue sometime in the future.
However anyone here feels about dialysis, I hope we all can find a way to have some peace and joy in each day. If you are having a bad day, all you need to do is post, and someone will be quick to lend an ear and a shoulder to cry on.
:grouphug;
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For those who don't understand why Epoman named this site, I Hate Dialysis, please read his post and the attached arcticle:
http://ihatedialysis.com/forum/index.php?topic=922.msg9301#msg9301
An excerpt from the interview with Bill Halcomb (Epoman):
“The corporate boards are very moderated,” he said. “They delete posts, edit posts, and it made me feel silenced. I got fed up with it, and said ‘…I’ll just start my own board.’
“The next step was to decide on a name for the site. Lots of sites start, but never get off the ground, so I wanted something that would shock people, but also interest them, and that’s where the name comes from.
“Hate is a strong word, but it’s true. I am grateful for dialysis and will kiss the ground the creator of dialysis walks on, but I hate living with it, and I hate what it does to my body and how it makes me feel.”
Very interesting reading.
8)
You rock Zach! :kiss;
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That really does explain the name well. I believe that is how most of us feel.
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I'll just add my 2 cents worth... I liked glm's post, I LOVE the Russian/Soviet style humour... it is very funny I must admit.
for me, I think the name is very apt. The thing that steered me here was not that I googled "I hate Dialysis" but just something general to do with D (I can't remember what) but what drew me to have a look was exactly the name!!!! I mean I thought "Anyone who has a site named this has probably been there" and it made me think, when I brought up the main page, "this is a REAL site" - as Epo said at the time - the corporate sites are very.. corporate.. I am the sort who much prefers the real view.. expereicnes(good and bad) and stuff. Like people telling us how cold they get on hemo and stuff. that stuff is common and REAL WORLD. I had to join and add my little bit of experience and thoughts.
To me the name doesn't put me off(as a patient) or feel like it is only a negative site. I've never thought of the people here being especially negative about *life* - everyone can be negative about having to be on D (who would want that?) but I think most people here are generally the sort to be positive, want to help others and share their experiences and support, and overall be a positive force in this world than people just ranting about how unfair life is and how crappy it is to have kidney disease and so on.