I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: iketchum on August 12, 2009, 09:34:31 AM
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I was upset when a nurse at my unit said I shouldnt keep coming to IHD site because of all the mis-information being given out. How ignorant and shallow minded she is. Has anyone else been told this?
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Well that is not very nice to say. We are the people who understand one another because we are all going through similar experiences or the same thing! That was wrong of the nurse to say! Completely wrong! :thumbdown;
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The social worker at our clinic saw my IHD button and said the this was a site mostly for people to complain! I doubt she will be recommending it!
But we know better!
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Wow this is sad.
The nurses who trained me know about and even have some of the cartoons from here printed and hanging.
While they trained me when people would come in they told them i was an IHD member.
I ques the name is misleading unless you actually take a minute and come here to look at the site.
If they gave it a chance they would easily see this is the NUMBER ONE SITE for dialysis patients to come to :thumbup;
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mu husbands clinic was very negative about the advice he got here- they would not even consider the value of it.
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Any specific advice Glitter?
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The forum name with "hate" in it gave me the idea at first that it would be a negative site - but I know it's something people can identify with (dialysis patients I mean!) If you say to someone "I hate going to the dentist" no one thinks you are being negative - they totally agree - they can identify with the feeling.
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I've found that some of the staff at my clinic only want you to gain information about Dialysis from them, as though they're the experts and some "goofy" website can't inform one properly.
I was fortunate enough to be informed of this site by someone who posted on my blog and I've been here ever since. It was advice I received here that moved me to chance from 6 days/2 hour treatments to 4 days/3 hour treatments. Its worked out for the best, except the reasearch group that started me on that experimental treatment are angry with me now.
Guess what? Don't care. One iota.
Long live IHD.
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My mom's first day on dialysis, I told the nurse about IHD. Maybe it's the way I explained it that made her get so excited she finished with my mom then went right to the computer to look it up! I told her that it is a community of patients, doctors, nurses, caregivers, and others that support each other and share information. She was impressed at how much I knew about what was going on with my mom (although I'm sure there is a lot I don't know).
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What complete and utter BS of your nurse to say that! :rant;
I wish I would have known about this site when I was still a tech, I would of told my patients and I know quite a few of them would be very interested and find it very helpful.
I can honestly say after working in dialysis, most of you know as much and MORE than I ever learned in my training and even things I picked up along the way.
And I don't think any of it is "bad" or "negataive" advice when it comes to treatments and complications, we are not here to harm one another, but to help! Shame on her, it was bad advice for her to say that to you!
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My renal dietician reacted similarly when I told her how much I loved it here, and all the good information we have. Similarly as in " Oh, yes, I have heard about that"
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I got the same bs from a few of my nurses - generally the ones I liked the least, and who seemed the worst with the patients. "You can't believe anything you read online." and "They aren't doctors - they don't know anything." I'm not an idiot. I'm not going to start reading some advertising nonsense and fall for some quack cure. I do recognize the value of having other patients to compare treatments with, share experiences with, and definitely exchange coping methods with them, too. the information on this site is invaluable. We're also pretty good, as a group, of jumping on anyone trying to put up dangerous misinformation.
The center I'm at now has both nurses and techs who are familiar with the site, and think it's wonderful. The RN has several times asked me to get some info off the site for her to give to some of her non-computer literate patients, such as recommendations for the best tasting protein bars and powders. The tech in charge of our bulletin boards printed off a slew of "You might be a redneck dialysis patient" posts and put them up for everyone to read.
I think some of the nurses don't like it when a patient is well-informed - it makes their own lack of knowledge more obvious!
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The staff at my unit know about IHD, but are too busy getting drunk with "Thunder Bunnies" to actually learn something about their jobs or life or anything for that matter.
:beer1;
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Just don't tell them where you got the info!!!! We did a lot of research and hubby could tell a lot of the nurses things they didn't know about dialysis. They often didn't believe him but when they checked it out they found out that he was right!!!Sure wish this site had been around 12 years ago when hubby was in ESRD and we had no info at all about what was going to happen. We have had nurses tell us not to believe everything that is online. I think it makes them feel inferior!!!
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Who would be better to understand and give information to kidney patients then patients themselves? I'd listen more to someone in my position then someone who has been "trained" in ESRD and has no idea what it really is like.......mentally or physically.
I'm a perfect example. I came to this site to find information from "actual" kidney patients about dialysis. My doctor has been really pushing me for a while now to start but hearing it from someone who only knows based on what they have been taught opposed to hearing it from people who actually have "been" there, is a whole lot different.
I don't care who you talk to, doctor or another patients, everyone has an opinion. This site shares others stories but its up to each individual to make their own decisions. Hearing other opinions can only open your mind. I believe you can only make good decision if you educate yourself.
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My nurses all think it's a wonderful site, and have a poster on their wall. Also the local kidney foundation put the site name in their newsletter. Not all professionals have a problem with it.
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IHD is not wellknown in South Africa... I think it is only me and Draven on here.
I have to say that IHD has played a huge roll in my way of thinking more than anything else.... It is the most positive place to be!!!!
Thanks IHD family!
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:secret; LOL it was my social worker who found this sight and told me about it so tell your nurse to kiss your :sir ken;
EDITED: Fixed smiley tag error-kitkatz,Moderator
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that nurse was definatelt out of line. but i think that some people want you to remain uninformed because that makes you easier to deal with. i've had nurses who wouldnt let me look at my record book, or refused to let me see what was on the machine. i didnt bother to mention the site to them because i doubted id get a positive response from them. Knowledge is power though 8)
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A nurse at my dialysis unit actually recommended i come here. ;D
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Has that nurse ever come and read any of the post? AHHH that makes me mad!
And on top of it all, this site is for support, there is no nurse out there that is gonna understand exactly what kind of support each of us needs. Everyone is diffrent. I don't see what is wrong with comming here saying that this is happening to you, and having 15 people tell you they went through the same thing and this is what they did.
:Kit n Stik;
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This is the kind of ignorance that we need to be protected from. And it takes a place like IHD to do that.
My vascular surgeon was very impressed at some of the things I told him (learnt from IHD) and called me an 'informed patient'.
thank goodness, my unit is very aware of IHD and we even have a poster on our notice board.
THANK GOD FOR IHD!!!!
'professionals' who don't like IHD :Kit n Stik;
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the truth is, there is a lot of misinformation spread on the 'net. but anyone who has spent any time here knows, there are exceptions to that 'rule', and this site is one of them.
some people are threatened by the sharing openly of this kind of information. they're afraid their ignorance will be made public, perhaps. ;)
i love the line from that nurse, 'they don't know anything; they aren't doctors.' shows the mentality of some people is slightly askew, hm?
but they don't really know anything. they're just nurses.
:rofl;
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Good one !!!! :rofl;