Been advised against this site ...

[Epoman]

I think this is a really great site.  If you're feeling down about something, you either get sympathy, encouragement, a boot up the backside or all three

I can't find anything negative in this site at all.  It tells it like it is but still has a tremendous amount of humour in it too.  I read the jokes thread yesterday and laughed my head off

All I can say is "keep up the good work"

Thank you so much, it's nice to hear the good things people have to say about this site.

[BigSky]

I asked my social worker to print out the IHD flyer and she refused. She said I can't put any advertisments for sites up neither .. but I can print it out myself on my crappy printer and show people individually ..

I am not sure if it was the name of the site or what that she was against ... 

More likely that she refused because they do not want to be seen as endorsing anything.  Isn't really all that uncommon anymore in any business.

[Kelly528]

I think it's great that you are learning about your illness. We encourage all our patients to learn and ask questions. Other wise we won't know what is going on when they come in for treatment. As you are aware. Most patients have mulitple diagnosis not just ESRD. So you have to be knowledgeable about those also. Nice little site I'll have to recommend this to some of my patients that have access to the computer.

[goofynina]

Hi Kelly,   glad you found us and joined, Welcome... Now, if you can please go to the Introduce Yourself section and tell us a little more about You,  we'd love to hear more from you and about you... Hope to hear from you again soon....

[angieskidney]

I asked my social worker to print out the IHD flyer and she refused. She said I can't put any advertisments for sites up neither .. but I can print it out myself on my crappy printer and show people individually ..

I am not sure if it was the name of the site or what that she was against ... 

More likely that she refused because they do not want to be seen as endorsing anything.  Isn't really all that uncommon anymore in any business.

YA! That is exactly what she said but me being dyslexic I could not remember the word "endorse" to express what she said. Thanks! That is exactly the reason! Any suggestions?

[BigSky]

YA! That is exactly what she said but me being dyslexic I could not remember the word "endorse" to express what she said. Thanks! That is exactly the reason! Any suggestions?

Well you could print one copy and take it to a copy shop and print out a few copies on the cheap or copy the info onto a disk and to the same thing as some copy shops will make copies from a disk if you have it.  Have seen copy shops charge anywhere from a couple cents to ten cents a copy.

[okarol]

Just came across this thread. It's good to read.
Then I started wondering... anyone heard from mattyboy lately?

[thegrammalady]

i guess i'm lucky, my neph thought this site was a good idea. of course anytime i completely understand what he's suggesting and say ya sure lets do that, he plays devils advocate. he has always wanted to make sure i know what all my options

[virrat]

Yes! Yes! Yes!  Your postings have given me a boost.  If you remember my introduction, I am the patient who plans to do a doctoral thesis on the information seeking behaviours of dialysis patients.  My premise is that we seek information in order to answer questions, but also for therapeutic purposes.  Having the information, sometimes good or bad, eases the anxiety we feel when we are at a loss.  My belief is that information is everywhere; it is up to the individual to decide what is information and he/she uses it.  Some people in the medical profession might deride the information found on this site because it does not conform to their perception of a reliable source, but  when you get down to it, it is up to us.

[RichardMEL]

I am one of those people who prefers to understand what is happening and why, because understanding (or perhaps partial understanding) is key to coping for me. I'd rather not sit there and be told whatever person X wants to tell me... luckily I have some nurses who do sit and explain stuff to me and that really helps. It also motivates me more to, for example, drink less, or be more strict with my diet etc....

I can, however, see a medical person's issue with a site like this. Let's say I have condition X, and I go on a board and say "hey.. I have condition X.. what might happen?" and person Y comes back and says "well I've got X as well, and this and this happened but if I did this it fixed it up" - that sort of thing COULD be dangerous - everyone is different!! A few weeks ago I was talking with the nurses about my dry weight and they were going to put it up.. but I said "well but hold on, my bp isn't low.. it's a little high... wouldn't that mean if anything I should take the dry weight DOWN a little?" and they looked at me and said "that's only one thing we take into account, there are others.." and for me it underlined that all of this stuff can be very complex and things can vary from patient to patient....  I like to read general advice issues here, but I wouldn't want to take say medication advice or something from here without talking to my doc etc about it. I feel maybe the medical folks are afraid that a half informed person without understanding all the variables at play could cause themselves more problems than good.

For me, I mostly come here for the feeling of support, and if something happens to me, chances are more folks here will have had it and can relate, and that really helps me cope more without feeling "it's just me"

So I can sort of see both sides to the argument, but I'm all for spreading the word... after all I see this site as one of community support, and I think we all need that!

oh, btw, increasing my dry weight has helped

[Epoman]

I am one of those people who prefers to understand what is happening and why, because understanding (or perhaps partial understanding) is key to coping for me. I'd rather not sit there and be told whatever person X wants to tell me... luckily I have some nurses who do sit and explain stuff to me and that really helps. It also motivates me more to, for example, drink less, or be more strict with my diet etc....

I can, however, see a medical person's issue with a site like this. Let's say I have condition X, and I go on a board and say "hey.. I have condition X.. what might happen?" and person Y comes back and says "well I've got X as well, and this and this happened but if I did this it fixed it up" - that sort of thing COULD be dangerous - everyone is different!! A few weeks ago I was talking with the nurses about my dry weight and they were going to put it up.. but I said "well but hold on, my bp isn't low.. it's a little high... wouldn't that mean if anything I should take the dry weight DOWN a little?" and they looked at me and said "that's only one thing we take into account, there are others.." and for me it underlined that all of this stuff can be very complex and things can vary from patient to patient....  I like to read general advice issues here, but I wouldn't want to take say medication advice or something from here without talking to my doc etc about it. I feel maybe the medical folks are afraid that a half informed person without understanding all the variables at play could cause themselves more problems than good.

For me, I mostly come here for the feeling of support, and if something happens to me, chances are more folks here will have had it and can relate, and that really helps me cope more without feeling "it's just me"

So I can sort of see both sides to the argument, but I'm all for spreading the word... after all I see this site as one of community support, and I think we all need that!

oh, btw, increasing my dry weight has helped

Yeah because doctors have all the answers and they know best.  I understand what you are saying, but I have brought up medical issues to some nephs that had no idea what I was talking about. I prefer hearing from fellow patients who have LIVED through situations than a doctor who goes completely by the textbook. Just because a person is a doctor does not make them an authority, not even a neph. Some nephs are indeed very wise and are current in advancements of nephrology however some are not. At the very least do research and do not solely base your decisions on whatever the "Doc" says.

An informed/educated patient is a healthy patient. I prefer "LIFE" experience over "Textbook" experience.

- Epoman

[kitkatz]

I have been here on IHD.com for almost a year.  The support from everyone has really kept me sane and from losing my mind over this past year.  I struggle with the issues hubby has and I struggle with dialysis issues.  No matter what is has been someone is here to tell me to hold on.  This site has become a second home to me.

Support, advice, and a well deserved kick in the pants sometimes is what I find here.

[Wattle]

I don't care if my team 'advises' me not to be part of this or any site on-line. As a home dialysis patient I only see my doctor every six weeks and I never see anyone else on dialysis. Just being a member here for a short period has re-enforced to me that its o.k to ask questions and demand answers. Knowledge for me is everything, I have to understand every detail. I have always thought that I must come across 'bossy' to my Neph because I always want to know every 'why and how' detail. This site gives me the courage and the determination to ask the questions and find the answers.

Its wonderful to be able to come on-line and feel I am not alone on this journey!   

[AlasdairUK]

Just came across this thread. It's good to read.
Then I started wondering... anyone heard from mattyboy lately?

I sent a PM a week or so ago and did not get a response. I'm sure he just busy and will come back when he can.

At the end of the day it is only advice. They can advise us not to have a look at the site and we can advise them to look at the site. I think we have reached a standoff.

[KICKSTART]

While i think we all use our common sense on here and realise we do not all have the same conditions (although we all have kidney failure in one form or another). I find that although some of the information posted on this site relates to me and some doesnt ..its that feeling you get, that your not the only 'one' that gives you great comfort. 

[nextnoel]

I find information is helpful because it calms me down!  What I know, however unpleasant or difficult or initially frightening, is NOTHING compared to what I can imagine!  And I don't like surprises - forewarned is fore armed, far as I am concerned.

[Triker]

I think I'll probably live longer, thanks to the information I've gathered from this site. Too bad for them, (meaning the clinic staff), they'll have to put up with me longer.

[bluedove57]

I've found this site because my nephrologist told me about it. I love it and I'm getting even more educated than I was. Take one day at a time. Tomorrow isn't here yet. Your Mum is right, what is ahead of you can't go by you.  for the creator of this site.....

[del]

We have always been actively involved in hubby's treatment -even before he started dialysis.  We have done a lot of research and thre were times when the nurses at the unit would ask hubby the answer to questions.  I think every one needs to be informed.  Nurse sometimes have mis information even though they are the ones you are supposed to trust with your life. This site is fantastic-thanks epoman.  It helps you see that other people have the same problems as you.  It helps to discuss and see what they have done. Hubby has even had to tell some nurses and patients what foods not to eat for phos and potassium.

[girl-x-treme]

so sorry to hear about your cliinic. I love mine! Its the only non profit clininc in the city my home training nurse Becky is who told me to come here. She and the other staff know and promote it. I figured out on my own why I was so broke out. I knew it had to do with toxins but I wasn't exaclty sure then when I started training I was told it the phosphorus toxins coming out. So now I take my meds!

[Triker]

so sorry to hear about your cliinic. I love mine! Its the only non profit clininc in the city my home training nurse Becky is who told me to come here. She and the other staff know and promote it. I figured out on my own why I was so broke out. I knew it had to do with toxins but I wasn't exaclty sure then when I started training I was told it the phosphorus toxins coming out. So now I take my meds!

That will cure you of letting your phosphorus get too high!  It's like having the hives. I was told about that, but I've learned about an awful lot here that I didn't have explained to me.

[angieskidney]

so sorry to hear about your cliinic. I love mine! Its the only non profit clininc in the city my home training nurse Becky is who told me to come here. She and the other staff know and promote it. I figured out on my own why I was so broke out. I knew it had to do with toxins but I wasn't exaclty sure then when I started training I was told it the phosphorus toxins coming out. So now I take my meds!

That will cure you of letting your phosphorus get too high!  It's like having the hives. I was told about that, but I've learned about an awful lot here that I didn't have explained to me.

Same with me! I wasn't good with my Phosphate and then me ta girl who had almost died from high levels of Phosphate that caused her to have calciphylaxis! Look it up! It is deadly! Even though she lived she can't get a date because of how it has left her body and people are so into looks Take care of your diet and this can be prevented!

[billoggblog]

On speaking to my renal consultant regarding IHD, she said "When something Good happens, you tell a few people, when some thing Bad happens, you tell EVERYONE".  These sites are full of Everyones...........She's never even looked at the site.

I also told her I had been reading a lot about NxStage, she had no idea what I was talking about!!!  That's my EXPERT Renal Consultant ....

[angieskidney]

I also told her I had been reading a lot about NxStage, she had no idea what I was talking about!!!  That's my EXPERT Renal Consultant ....

It depends where you are as NxStage (as far as I know) is ONLY available in the USA.

[jbeany]

But angie, if she's a "renal consultant" shouldn't she be reading the latest trade magazines and medical journals?  They have all kinds of articles on NXstage, so if she's really doing her job, she should at least have heard of the latest technology.