Name Change?

[Hemodoc]

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?

[shayron1982]

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.

[MooseMom]

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!

[galvo]

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?

[cariad]

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.

[cariad]

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.

[noahvale]

*

[noahvale]

*

[Hemodoc]

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.

[Shaks24]

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.

[cattlekid]

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?

[jeannea]

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.

[UkrainianTracksuit]

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!   

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.

[MooseMom]

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...

[noahvale]

*

[UkrainianTracksuit]

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?    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!   

[Sorry, please return to your regularly scheduled discussions.  I don't want to cause any harm!]

[Zach]

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

[Hemodoc]

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.

[Hemodoc]

http://www.mdjunction.com/forums/dialysis-discussions  213 members

http://forums.homedialysis.org Home Dialysis Central with budget from industry -

Home Dialysis Central Forums Statistics

Threads 2,903 Posts 21,966 Members 621 Active Members 24
Welcome to our newest member, kaisse81


http://www.kidneyspace.com

    25632 Posts in 4404 Topics by 2630 Members. Latest Member: Momofmeg
Latest Post: "Re: A Transplant is not ..." ( Today at 01:01:21 PM )
View the most recent posts on the forum.
[More Stats]

https://groups.yahoo.com/neo/groups/NxStageUsers/info
Members :241

Perhaps a name change for all of these forums as well would bring in thousands of members.

[cariad]

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?    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!   

[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.

[UkrainianTracksuit]

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.

[cariad]

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.

[noahvale]

*

[Hemodoc]

http://www.mdjunction.com/forums/dialysis-discussions  213 members

http://forums.homedialysis.org Home Dialysis Central with budget from industry -

Home Dialysis Central Forums Statistics

Threads 2,903 Posts 21,966 Members 621 Active Members 24
Welcome to our newest member, kaisse81


http://www.kidneyspace.com

    25632 Posts in 4404 Topics by 2630 Members. Latest Member: Momofmeg
Latest Post: "Re: A Transplant is not ..." ( Today at 01:01:21 PM )
View the most recent posts on the forum.
[More Stats]

https://groups.yahoo.com/neo/groups/NxStageUsers/info
Members :241

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.

[noahvale]

^