dialysis patient education

[draven]

We have a new patient at our unit who started last week. A nice elderly lady. on her second time on dialysis i noticed that she looked a bit dazed and i made a comment to the nurses that she might be crashing. nurses told me not to worry she is fine (they did not check her b.p)
about 5 minutes later a medical sales rep came in to talk to her and this poor lady could not answer any questions and was completely out of it.
only when the sales rep asked did they check her b.p (it was 80 over 44).

later that afternoon i spoke with her and found out she has had no one talk to her about the the Renal Diet or fluid restrictions or crashing.
on Monday morning in the waiting room she was completely terrified to go on to the machines. she was shaking and in tears. and to top it off
she became nauseas and almost fainted and threw up in the last hour.

now on Wednesday she phoned the unit to say she doesn't "feel" like coming to dialysis. i have a strange feeling she is to scared to come to dialysis.

Surely someone should have visited her in the hospital and give her some info or some booklets on dialysis.
Before i went on to dialysis i though it involved 1 needle and you went on for 1 hour once a week.
That was until i got a booklet in hospital.

[boxman55]

where is the social worker in your unit. they need to be told about this and react quickly...Boxman

[RichardMEL]

Thanks no good... at least you tried to help and took notice of your fellow patients... I bet a lot of others wouldn't... so good on you!

I have noticed in my unit that often they hold off on the diet and fluid talk for a week or two after people first start dialysis. At least here they tend to try to ease you in. So a first run they do for 2 hours, with no UF and a low pump speed, 2nd run 3 hours, 3rd run 5 hours (or 4.5 or whatever the docs determine the final amount should be). I think the thought is to not hit a newbie with everything all at once (either that or they are just poorly managing new patients...). I know when i started I didn't get the talk for a couple of weeks. I had known there would be fluid restrictions... but I had no idea how severe it actually would be. I thought it would be more like you need to watch what you drink and not drink certain things. Hey how wrong I was!!!

I definitely agree introducing people to dialysis is so very important. In some ways the WAY you are introduced to it could mean all the difference between doing OK and adjusting quickly, and having a difficult time. I realise in acute conditions it's not easy... but in chronic ones where there's a lot of time to prepare... I think it makes sense to manage the introduction better.

I know when I am in the unit and a new person starts and they put them near me I try and talk to them (as appropriate, sometimes the nurses point me out because they know I like to try and help welcome new people) and make it a little easier for them. Put them at ease (well as best you can) maybe chat with their partner or visitor while needles go in etc... that sort of thing. give a patients perspective that things will be OK and you can do OK on dialysis.. that sort of thing.

I think most of the time I create a good impression... specially if they're female and good looking !!!!   

[overthepond]

I have noticed in my unit that often they hold off on the diet and fluid talk for a week or two after people first start dialysis. At least here they tend to try to ease you in. So a first run they do for 2 hours, with no UF and a low pump speed, 2nd run 3 hours, 3rd run 5 hours (or 4.5 or whatever the docs determine the final amount should be). I think the thought is to not hit a newbie with everything all at once (either that or they are just poorly managing new patients...). I know when i started I didn't get the talk for a couple of weeks. I had known there would be fluid restrictions... but I had no idea how severe it actually would be. I thought it would be more like you need to watch what you drink and not drink certain things. Hey how wrong I was!!!

I am sorry but I cant quite believe that something like the above goes on  - is this normal for newbies or Pre-Dialysis as we call them in the UK over in the US??

All patients should be given the full facts, from the dieticians, social workers and consultants, before even getting anywhere near dialysis as it helps that person get accustomed to what is expected of them.  They are also told that it is in their best interests to keep to the strict diet and fluid intake (usually 1 Ltr per day) to aid their dialysis and avoid any complications.  As for easing patients in shouldn't that be done as far in advance of treatment as possible ?

I know things differ between our countries but surely something as important what a pre dialysis patient should know before begining treatment should be the same.

[devon]

It's a shame she didn't come here and get the information and support like I did when I was starting dialysis.  I went into it knowing so much more than I realized and armed with good questions to ask.  

I got the orientation while I was already under treatment.  That seems to be the regular course.  It was a little late, frankly.

There really needs to be a booklet or something for newbies that will introduce them so they know what to expect.  Is such a thing available, maybe from the Kidney Foundation?

[overthepond]

Not sure if anything like what we have can be done but there is a pre dialysis program set up at my unit which invites those patients starting out on this way of life to a half days informal meeting where they are shown around a dialysais unit and have very informative talks and demonstrations from Haemo nusres, PD nurses, renal dieticians, social workers and from actual renal patients on Haemo, PD and Transplant along with time to ask questions

It isn't voluntary but those attending have gone away pleased that they were able to allay any fears they may have had about what is happening.

[draven]

we don't have a social worker, or at least she has not made an appearance in the past 10 months i have been at my unit.
there are about 5 new nurses and 1 head nurse/manager, the only other staff are a admin lady and the dietitian.


i hope the poor lady is well enough to come to dialysis tomorrow will give her my dialysis booklet i was given when i came out of hospital.

[twirl]

before I went on dialysis I thought they made a place in your arm that could be opened and the tubes stuck in with no needles
and that was 3 years ago
and I thought it was one needle
oh, what we have to endure in reality

[petey]

No educational booklets for my Marvin when he started almost 14 years ago ...  just trial and error and lots of "Nobody told you this could happen?  this is how you'd feel? etc."  We learned quickly -- very, very quickly -- to ask lots of questions and research on our own.  That's not the way it should be, but, unfortunately, that's the way is it a lot of the time.

Marvin has always been a patient's advocate, too.  He tries to help the new ones through it and gives them all the info he has learned the hard way.

[okarol]

By the time many patients get to dialysis they are feeling sick and dazed and crappy anyway, so even if they are given information they might not absorb it. I think the gentle approach is a good idea, the whole process is so overwhelming when you start, can't they ease you into it? That poor lady, she might just quit - what a tragedy that would be!

[monrein]

Sometimes when I hear stories like this one, I just want to reach out, grab some one and not care if I do go to jail for shaken medical professional syndrome.

[Ang]

i've  been  at  my  unit  for  about  2  years  now.

on  first  day  i  was  asked  if  i  would  be  a  patient  rep,i  accepted,  earlier  this  year  i  was  asked  to  talk  at  pre  dialysis  seminars,  i  accepted,too  this  day  i  never  got   a  response on  either.
asked  a  patient  recently  why  no  reps,told  can't  get  em  all  at  the  one  time,so  no  patient  rep  anymore.
so  now  i  come  to  IHD  and  i  offer  my where  i  know  it  will  appreciated.

i  tell  everybody  "information  is  power"

i  made  the  mistake  of  not  learning  beforehand,cause  when  i  walked  in  on  day  one,WTF,
was  all  i  could  think  to  myself.






EDITED:Fixed smiley tag icon-kitkatz,moderator

[RichardMEL]

I have noticed in my unit that often they hold off on the diet and fluid talk for a week or two after people first start dialysis. At least here they tend to try to ease you in. So a first run they do for 2 hours, with no UF and a low pump speed, 2nd run 3 hours, 3rd run 5 hours (or 4.5 or whatever the docs determine the final amount should be). I think the thought is to not hit a newbie with everything all at once (either that or they are just poorly managing new patients...). I know when i started I didn't get the talk for a couple of weeks. I had known there would be fluid restrictions... but I had no idea how severe it actually would be. I thought it would be more like you need to watch what you drink and not drink certain things. Hey how wrong I was!!!

I am sorry but I cant quite believe that something like the above goes on  - is this normal for newbies or Pre-Dialysis as we call them in the UK over in the US??

All patients should be given the full facts, from the dieticians, social workers and consultants, before even getting anywhere near dialysis as it helps that person get accustomed to what is expected of them.  They are also told that it is in their best interests to keep to the strict diet and fluid intake (usually 1 Ltr per day) to aid their dialysis and avoid any complications.  As for easing patients in shouldn't that be done as far in advance of treatment as possible ?

I know things differ between our countries but surely something as important what a pre dialysis patient should know before begining treatment should be the same.

I don't think I was quite so clear. I, at least, was invited to a pre-dialysis seminiar that I attended what ended up being a couple of years before I actually started. They went through everyting over a 2-3 hour period.. showing us the needles, going on about fluid and diet etc and generally trying to tell us what to expect. For me at least that was a lot of information to take in, and given the time elapsed between when i went to the seminar and started, that I guess some of it didn't quite set in (and given I had no real context at the time, and just seeing how big the needles were freaked me out too so I was kind of anxious about the whole thing)....

So my team DID do their best in terms of education I think. At least they could do something like that for me as opposed to an acute patient who one day is fine the next they're getting fitted with a permacath and had their whold world thrown upside down. I wouldn't wish that on anyone.

[overthepond]

Dont you get follow up sessions both before and after the Pre dialysis session??

I can understand how easy it is to get confused, worried and very anxious if those coming onto dialysis are not taken through the process of whatto expect and when in a slow and sympahetic way.

i was diagnosed way back in 1978 and kept of dialysis till 89 and the only introduction I got was a trip round the unit a month or so before but i already knew what I was sort of in for - how I wish I had got what they have today.

[draven]

Well its not looking good, the poor lady has not showed up for dialysis since that monday. lets see if she shows up tommorow (monday).

[jbeany]

This website was my pre-dialysis education.  There was very little offered at my center.

[RichardMEL]

Dont you get follow up sessions both before and after the Pre dialysis session??

No followups here. Basically it was you start and get used to it!

[pelagia]

Stephen had, I think, five dialysis session in the hospital after the surgery to remove his kidneys.  We know now that they were almost crashing him every time.  At one point the dialysis tech had the bed tilted so far back, almost vertical, that his feet were in the air and head was near the floor - apparently to keep him from crashing.  Acted like nothing was wrong.  Of course, I was totally unprepared and he was weak and in pain after major surgery.  It was horrible.  We had absolutely no idea what to expect.  There were no dialysis prep sessions.  It's like throwing a kid into the deep end of a pool and telling them - swim or you'll drown.

[kitkatz]

I kicked and screamed at the hospital until someone realized from the nephrology department "Oh you have not gotten the welcome to dialysis bag, yet?"   "No you moron! Did you think I was screaming at you for information for no reason!"
A welcome bag had a video and a book. It also had diet books and information on what to eat.  Very helpful. The book was excellent. I read it cover to cover in two days. 

[TynyWonder]

Draven,

How is that lady doing now?   Has she been back?    Let us know please...........

[draven]

Sorry for the late reply. good news the lady returned after a week away from the unit.

She seems to have gone from being scared of dialysis to being angry. She was friendly and we would chat a little, but now she doesnot say a word. just gives everyone a cold icy stare.

[TynyWonder]

Well, Draven, I don't know if you went through the angry stage but I sure did and still do at times & I have been on dialysis 10 months now.   I guess the only thing you can keep doing is to try & talk to her but eventually you may get tired of trying because we can only try so long, ya know?   But I am glad to know she came back at least.   Did you ever tell us how old she is?