I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MattyBoy100 on August 26, 2006, 09:21:31 AM
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Hi everyone,
just letting you all know that since I started using this site, the nurses and staff in my unit have advised me to stop!!! They say I will make myself paranoid but I think it`s really cos I`m armed with information when I seek answers from people about my condition! An example is when I asked about spots on my neck, all I got told was is it`s spots and to wash more. But I put the same question to this site and was told it`s toxins being released from my system and will settle down in time. I informed my unit of this and the nurse said yes, it`s toxins coming out of your system. Now, why couldn`t they have told me that when I first asked?
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There has always been this school of thought from the medical community: A little knowledge is bad. :-\
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Probably either because they think patients are idiots and can't understand medical explanations, or they didn't really know themselves.
There are some (a lot) of medical professionals that are going to feel threatened when you educate yourself. Don't let that stop you. Just be sure and consult with your doctor before you make any medical decisions/actions.
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I am really surprised to hear that from your nurses and staff. Is it that they haven't checked it out themselves? Maybe just the sound of the name is their problem.
Maybe you need to invite them to check it out and to register.
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Probably cuz because you know a little more than they think you do, THEY are the ones who feel stupid now. You should advise them to come check out the website and maybe they can learn a little more as well. :)
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I'm curious> did they advise you against just IHD or against all the self help self education sites?
Mom 3
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I'm curious> did they advise you against just IHD or against all the self help self education sites?
Mom 3
I am pretty sure it's just our site, because of the name. You know the old saying "don't judge a book by its cover" :( But it's ok because for every 1 person who thinks this site is to negative and will never give us a chance and come check us out, there are 5 other people who will and see what we are really about. ;)
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They advised me against this site. It`s where I get most of my information now if I need to know something that hasn`t been properly explained to me at the hospital.
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The medical establishment will do everyting in their power to have you use their resources so they can keep you as a customer. Customers mean money.
john
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We are in the UK and have the NHS. The government and pharmaceuticals hold the purse-strings. They don't like people knowing about their condition whatever it is and because people have places like this they can come to for information about their condition they are now in a position to question doctor's decisions, medication etc. It was thanks to a website such as this (for another medical problem) that my husband is still alive. He had a major heart attack 2 1/2 years ago and was put on some medication. They gave him another and I noticed within a day or two that it was having an adverse affect on him (we wives notice these things). I did a lot of research on it and told him he would be wise to go and see his GP and discuss stopping this particular medication. He didn't and a few months later ended up in hospital in the A&E (ER). The doctor there went absolutely ballastic when I reeled off the drugs he was on and said he should never have been put on it. Fortunately, it's a drug that only stays in the body for a maximum of 24 hours. Next day, he was right as rain. He made an excellent recovery and does not use any drugs now but had we not been educated it would have been a different story.
People are now in a position to learn so much about their conditions that if there is a problem, they are more likely to seek legal redress through the Courts - and be in a much stronger position to win. That is the main reason the medical profession don't like sites such as this. One doctor actually told me he would be happy to see all medical sites banned from the internet >:D
The days of "doctor knows best" are long gone - and not before time.
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Being both a nurse and a Dx patient, I partially agree what the nurses have said. I don't agree with what they said to Matty about his "spots" though, that is just unprofessional. I don't think anyone on here will agree with me but I can handle that. I'm not directing this at this website, as I think this is a great place for talking to either other. I do believe you can know too much. It is very important to educate ourselves about our illness, but sometimes there are things we don't need to know in order to keep our sanity. We also need to remember that this site should not be used as a substitute for medical diagnosis. Always always seek medical advice if you are unsure of something. The reason I am saying this is because I am currently suffering of "knowing far too much". I'm not at all joking, I am seriously having a very hard time dealing with it. I'm getting increasingly depressed and anxious, which is partially due to knowing too much. The reason why Ive tried to educate myself so well, is because I eventually would love to work in the dialysis field. However, I am now constantly worrying about things I shouldn't be worrying about, and becoming overly paranoid about things that I shouldn't be.
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Amber. There are people - like me, who want to know everything there is to know about their illness, it's effects, what can be done about it etc. I'm one of these people who, if I don't know about the problem, my imagination runs riot. If I'm clued up on the subject it then becomes less threatening and therefore although apprehension might still be there, fear is not. I just feel personally, that if I know about something I can meet it head-on.
There are some people who would rather not know and adopt the "ignorance is bliss" attitude which would be fine for them.
I think it is very much an individual thing to each person and everybody handles things differently.
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I totally agree with you Python. Its kind of hard to explain what Im trying to say. I certainly dont have an ignorant attitude, and I do want to know things. With me, I am worrying about things that wont happen. I just get carried away with my imagination thinking what if this or that happened. I dont know how to explain it really. But I do know I know too much, and get fixated on things I shouldnt be, and spending all my time worrying about these things instead of enjoying things without shit clogging my mind that doesnt need to be there.
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That's an easy trap to fall into Amber. I was once given a piece of advice from a friend many years ago:
"If you worry you die
If you don't worry, you still die
So why worry?!"
Another thing my Mum always used to say was "What's before you, won't go by you".
It's so easy to dwell on the negative side of things instead of the positive, good things. So easy to let things overwhelm you. Sharing how you feel is one of the most positive things you can do ;D
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Amber. There are people - like me, who want to know everything there is to know about their illness, it's effects, what can be done about it etc. I'm one of these people who, if I don't know about the problem, my imagination runs riot. If I'm clued up on the subject it then becomes less threatening and therefore although apprehension might still be there, fear is not. I just feel personally, that if I know about something I can meet it head-on.
There are some people who would rather not know and adopt the "ignorance is bliss" attitude which would be fine for them.
I think it is very much an individual thing to each person and everybody handles things differently.
Couldn't have said it better myself, but my husband is a little like Amber and I have to dole out the information as he needs it. He occasionally asks me questions and is actually getting much better about quizzing the medical professionals. Generally he trusts me to keep him informed of what he needs to know. We've been married a long time -- will be 26 years on Sept 8 -- so I'm pretty good at discerning when he's ready for more information, or when a situation is coming where he will need more information.
But, back to the original post -- all good doctors want educated, informed patients. In fact, IMO, everyone in the medical profession is first and foremost an educator, whether they like it or not. They get paid for what they know, much more so than for what they do. (Well, with the possible exception of some God-gifted surgeons. ;D) The stupid and/or egotistical ones -- the idiots in doctor suits -- the ones with the "God Complex" (and that includes nurses and techs as well) , want stupid patients who don't ask questions and do as they're told. For some their greatest fear is revealing their own stupidity. When you couple ignorance with a huge ego, which can't be bothered by lowly patients, it can be a deadly combination.
Nobody knows my husband better than I do, and if I know enough, I may be able to help prevent many of the numerous life threatening problems CKD patients face on a daily basis. I keep reminding myself that doctors do indeed bury most of their mistakes, but if we're educated and vigilant then, hopefully, my husband is NOT going to be one of them.
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They just don't want to take the time to explain things...your just another number to them...when you show them that you are armed with correct information it forces them to exercise their brains a little bit. Hope they don't feel overworked lol..
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I don`t think knowing too much is a bad thing. On the contrary. If you know what`s going to happen next or what could happen next then I believe you will be far better equipped to deal with each situation as it arises. Ok, it may not be good but at least you can soften the blow by being prepared!
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I told a friend of mine about this website and without even looking at it she told me it was negative and bad to read! So I told her this website is my lifesaver and without it I'd probably go nuts. I got sick of the "we're as happy as clams on dialysis and we are smiling dumb ninnies who love it" mentality of the corporate owned information sites. We desperately NEED the truth without the sugar coated BS they dole out to us every day in the dialysis clinics. The truth hurts sometimes but we're adults who can share the pain and the disappointments, the bad times and the good times. That's what makes us come together here, we can handle the daily BS that's handed to us and either get a good laugh or a good cry. We understand here--that's all I ask for. I don't need diet tips sometimes or how to help restrict fluids. That's all well and good. I need someone to say to me "yeah, I know what you mean about catheters clotting, I know what you mean about feeling alone".
Eopman, you'll never know what you mean to me and what this website means to me.
Donna
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... Hope they don't feel overworked lol..
LOL
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I am a nurse and a dialysis patient on PD and the knowledge I have is not directly related to kidneys. In fact the only good thing about being a nurse when I had to start dialysis was that I knew where to look for information. (Also knew about sterile technique so handling things was easier than starting from scratch.) This site has been extremely helpful for me in letting me know the realities of hemo for when I have to switch over to it next year. I have been very reluctant and apprehensive about going onto hemo in the future. You all have helped me know the realities and that home hemo is very possible and that just maybe if I can use the NxStage, traveling (at least by car) is still a possibility without too much hassle.
I tell lots of people about this site and they say they will have to take a look. I tell them how supportive everyone is and that it gives us a place to rant and complain without putting all the stress on our loved ones at home. Epoman has created a great site to help us all stay SANE.
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Information is the power techs and nurses lord over us, it keeps us from become "difficult"
However I have only experienced this in one hospital and now being at a private Bayshore clinic we are encouraged to seek out information as there are no neph's at the clinic, our nurses will discuss how we are feeling while being put on and if we have any issues they will E-Mail the doctor or look up the answers in any one of the many texts or on the internet for us...Being informed allows us to ask the questions or raise concerns that only we can know about.
As to this site... without it I frequently had the urge to do some serious ear punching (line ups, driving) and I was also developing a serious anger towards people with avoidable diabetes, however given this outlet and being able to speak with people in the same situation has helped me to let go of my anger and I can't thank Epoman and all involved with this site enough.
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I've found that since I have more information, my doctors are more willing to discuss things with me. It seems like since I started reading information on this site, I have better questions for the doctors. So far, they seem to appreciate my interest and they've been receptive.
I can't believe that anyone who has taken the time to look at the threads on this site would warn someone against it. There's a lot of good, supportive information, and a lot of people who are willing to help. How can that be bad?
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If they warn you against this site tell them to come read some posts. We are not all angry disillusioned lunatics.
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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 ... ???
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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 ;D
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 ;D
All I can say is "keep up the good work" ;D
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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 ;D
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 ;D
All I can say is "keep up the good work" ;D
Thank you so much, it's nice to hear the good things people have to say about this site.
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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.
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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.
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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....
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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?
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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.
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Just came across this thread. It's good to read.
Then I started wondering... anyone heard from mattyboy lately?
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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
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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.
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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 :)
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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
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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.
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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! :cuddle;
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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.
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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. :grouphug;
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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.
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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. :D
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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. :2thumbsup; for the creator of this site.....
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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.
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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!
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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! ;D 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.
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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! ;D 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!
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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 ???....
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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.
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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.
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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.
You'd think so but I have been so disappointed myself by staff that I don't assume they know anything anymore :(
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I told my favorite dialysis tech, Sheila, about this site on Saturday. She went right over to the computer and looked it up. She thought it looked great. But her perspective may be different than most. She was a caregiver for many years to her husband on dialysis before she became a tech. So she has seen it from both sides, you could say. She knows sometimes patients just have to vent!