I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Centers => Dialysis: Workers => Topic started by: Hawkeye on July 26, 2006, 01:48:15 PM

Title: Inadequate Patient Training
Post by: Hawkeye on July 26, 2006, 01:48:15 PM
I have noticed that in all the clinics I have worked at (3 in all) the majority of the patients have no clue as to what is going to happen to them when they come in for their first treatment.  It's like they had an access thrown in and then shoved into a center without anyone properly explaing to them what is going to happen.  I know this is one of the reasons this site was created, so patients could get the answers they are not being provided.  I am just finding the severity of this to be incredably ridiculous.  The thing that really spurned this rant is that we had a problem with our solution delivery system today and I had to purge the acid lines because there was air in them.  This happens from time to time if someone doesn't properly plug the concentrate lines into the wall or jug.  I announced over the intercom that I need all PCTs (Patient Care Techs) to turn off their dialysate flows and the acid ports on the wall (If you don't turn off the ports the pressure of the purging forces acid through the machine and out a vent port causing a big puddle at every machine).  While I was going through the process of purging my manager comes up to me and tells me never to use the word acid again when we have this problem because it makes several of the patients nervous when they hear the words acid and then someone is playing with their machine.  I'm sorry if someone here doesn't know this, but acid is a part of the dialysate that cleans your blood, albeit a small part (Just for example 75% water, 20% bicarb, 5% acid).  Acid is also where they adjust things such as calcium by giving you a higher or lower dosage acid bath.  This is something I believe all patients should know about before being dialyzed, hell it even says acid on the front of Fresenius machines where the red ports plug in so why should I even think I have to worry about it.  Wouldn't they worry just seeing the machine, and thinking there is acid in it.  Is there anyone else out there either staff or patient that sees this same problem?  Is this just the this area that is lacking in training?  Thanks for listening, and please give me your thoughts on this training issue.
Title: Re: Inadequate Patient Training
Post by: Rerun on July 26, 2006, 02:33:48 PM
I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 

It is no big secret, but probably the "budget" won't allow training patients when they need to save for Las Vegas for the top executives.
Title: Re: Inadequate Patient Training
Post by: Hawkeye on July 26, 2006, 02:44:08 PM
I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 

It is no big secret, but probably the "budget" won't allow training patients when they need to save for Las Vegas for the top executives.

I agree for the most part, but I think home users should have even more in depth training since if something goes wrong they are their first line of defense.  Fresenius home machines and in center machines are two completely different beasts even though they look almost exactly the same.  I do agree though that there should be a training course given to all patients before they start treatments.  Even though I know no one likes watching them (yes staff have to watch the same mandatory videos every year plus many more) at least a video that every patient has to watch  before they start treatment that shows what is going to happen during a treatment and explains the terminology would be a big improvement.
Title: Re: Inadequate Patient Training
Post by: Rerun on July 26, 2006, 03:23:11 PM
Maybe that is the Social Worker's Job??  But, once she started telling me I was depressed I tuned her out.  But, then again when an alarm goes off she panics too.  :o
Title: Re: Inadequate Patient Training
Post by: kevno on July 26, 2006, 03:59:44 PM
Patients have always had to learn about the machines on there own. When I was 11,after dialysis I was in the Techs room watching Fred strip down the machines. At the age of 11  could put together my keele kidney for the Lucas machine I was going on. I know what are in all the fluids that a kidney machine uses, only because I have read the labels. I bet none of the newer patients have a clue what goes into running a dialysis machine. Are even what the Alarms are when they go off. I used to set up the machine, but now I just let the nurses do it. Get to the unit too late now. Fed up of all the patients arguing who is first on.
Title: Re: Inadequate Patient Training
Post by: bioya on July 26, 2006, 06:57:46 PM
In my years of dialysis, I found that you are right. Most patients are told they "need dialysis" and thats it. Most were started in acutes in a hospital setting and were told to be at a certain unit at a certain time and day and they would be started in the chronic setting. (PD is not big in my area). By the time the patient and their family showed for their scheduled treatment they were terrified, not knowing what was going on. It was sad. What I started doing was having the hosptial discharge planner and social worker call me when patients were being discharged to the unit and I would go to the hospital. I would do their initial assessment, have them sign their consents, and talk to them. I would explain as much as I could, what they would be exposed to. I told them the unit was loud, cold (and hot at times), very bright, and a lot of beeps and other noises. Many that had transportation, I would offer them a chance to come to the unit before their treatment and give them a tour and try to calm their fears.
Much of the problem can be blamed on the doctors. Many patients are followed by the doctor and they know for months and sometimes years that a certain person will be starting on dialysis. During those months and years, why don't they send the patients to the clinic and allow them to see what is going on, and what to expect. Let them watch a patient being put on and taken off circ. Let them see the machine, tour the water room, look at the lab, talk to the social worker and charge nurse. The doctors are for the most part arrogant and obnoxious. They don't consider the feelings of the patients at all.
I honestly don't understand why 90 percent of the patients are not on PD. Who would come to a outpatient hemo clinic if they had the ability and support to do home PD? I wish I had a magic wand to wave and cure kidney disease, but I don't. I use to get so sick of staff saying something like "I know" or "I understand" when a patient would complain of an issue. NO, you do NOT know, you can't know unless your going through it.
Ok, I got on a rant.. sorry!
Title: Re: Inadequate Patient Training
Post by: Rerun on July 26, 2006, 11:36:59 PM
The clinics won't let anyone come in.  I had to get my Dr. to call the clinic PLUS write me a note to go in and look at the machines and then had to ask permission to talk to a patient.  They should let potential dialysis patients visit the clinic everyday for a year if they want to. 

Maybe they are afraid they would lose business if people saw what was going to happen to them when they were in their "right" mind!  ;D
Title: Re: Inadequate Patient Training
Post by: Hawkeye on July 27, 2006, 08:02:10 AM
The clinics won't let anyone come in.  I had to get my Dr. to call the clinic PLUS write me a note to go in and look at the machines and then had to ask permission to talk to a patient.  They should let potential dialysis patients visit the clinic everyday for a year if they want to. 

Maybe they are afraid they would lose business if people saw what was going to happen to them when they were in their "right" mind!  ;D

I am not sure what the problem is, but no one listens to peons like me or the patients.  I'm just a grunt, and patients are meal tickets in their eyes so even when we have something important to say it falls on deaf ears.  I have talked to my clinic manager about it and to my technical supervisor too.  My clinic manager seem like they could care less, but my technical supervisor agrees with me.  Unfortunately he isn't in any better position to change things than I am.
Title: Re: Inadequate Patient Training
Post by: angieskidney on July 27, 2006, 10:49:30 AM
I have noticed that in all the clinics I have worked at (3 in all) the majority of the patients have no clue as to what is going to happen to them when they come in for their first treatment.  It's like they had an access thrown in and then shoved into a center without anyone properly explaing to them what is going to happen.  I know this is one of the reasons this site was created, so patients could get the answers they are not being provided.  I am just finding the severity of this to be incredably ridiculous.  The thing that really spurned this rant is that we had a problem with our solution delivery system today and I had to purge the acid lines because there was air in them.  This happens from time to time if someone doesn't properly plug the concentrate lines into the wall or jug.  I announced over the intercom that I need all PCTs (Patient Care Techs) to turn off their dialysate flows and the acid ports on the wall (If you don't turn off the ports the pressure of the purging forces acid through the machine and out a vent port causing a big puddle at every machine).  While I was going through the process of purging my manager comes up to me and tells me never to use the word acid again when we have this problem because it makes several of the patients nervous when they hear the words acid and then someone is playing with their machine.  I'm sorry if someone here doesn't know this, but acid is a part of the dialysate that cleans your blood, albeit a small part (Just for example 75% water, 20% bicarb, 5% acid).  Acid is also where they adjust things such as calcium by giving you a higher or lower dosage acid bath.  This is something I believe all patients should know about before being dialyzed, hell it even says acid on the front of Fresenius machines where the red ports plug in so why should I even think I have to worry about it.  Wouldn't they worry just seeing the machine, and thinking there is acid in it.  Is there anyone else out there either staff or patient that sees this same problem?  Is this just the this area that is lacking in training?  Thanks for listening, and please give me your thoughts on this training issue.
I noticed it said acid so I just figured that was only used in cleaning at the end after I am disconnected in the evening. I didn't know. They don't tell us this. And I am in a self-care unit ...

I think every patient should go through home training class even if they NEVER plan on taking the machine home.  That way we would learn about the machine and not freak out when the alarm goes off or we hear the word "air" or "acid." 
There IS no home hemo in my city ..

I do agree though that there should be a training course given to all patients before they start treatments.  Even though I know no one likes watching them (yes staff have to watch the same mandatory videos every year plus many more) at least a video that every patient has to watch  before they start treatment that shows what is going to happen during a treatment and explains the terminology would be a big improvement.
Oh I want to watch a video! Then I wouldn't feel so lost!! Why don't any units do this??

In my years of dialysis, I found that you are right. Most patients are told they "need dialysis" and thats it. Most were started in acutes in a hospital setting and were told to be at a certain unit at a certain time and day and they would be started in the chronic setting. (PD is not big in my area). By the time the patient and their family showed for their scheduled treatment they were terrified, not knowing what was going on. It was sad. What I started doing was having the hosptial discharge planner and social worker call me when patients were being discharged to the unit and I would go to the hospital. I would do their initial assessment, have them sign their consents, and talk to them. I would explain as much as I could, what they would be exposed to. I told them the unit was loud, cold (and hot at times), very bright, and a lot of beeps and other noises. Many that had transportation, I would offer them a chance to come to the unit before their treatment and give them a tour and try to calm their fears.
Much of the problem can be blamed on the doctors. Many patients are followed by the doctor and they know for months and sometimes years that a certain person will be starting on dialysis. During those months and years, why don't they send the patients to the clinic and allow them to see what is going on, and what to expect. Let them watch a patient being put on and taken off circ. Let them see the machine, tour the water room, look at the lab, talk to the social worker and charge nurse. The doctors are for the most part arrogant and obnoxious. They don't consider the feelings of the patients at all.
You are so nice :) I wish I had someone like you when I was on PD and then got hospitalized and woke up from surgery with a permcath in my chest and was told I would go to hemo the next day. Even though I was sick all my life I was still scared because I knew nothing of hemo. Only PD! So I could imagine how much MORE scarey it would be for NEW patients! :(
Title: Re: Inadequate Patient Training
Post by: deej on July 27, 2006, 10:52:01 AM
I know the first time I saw the inside of a clinic, I cried! I knew nothing of what was going to happen to me. My Dr. didn´t know how to explain it well and just left me there to talk to others. I agree that we patients are just pin cushions to most techs. I have a perfect example that happened at the clinic today. I had been noticing that most patients don´t stand in the middle of the scale. (our scale is floor level and can hold a wheelchair). I talked to the nurse on call and suggested that he put a large "X" in the middle of the scale with tape. That way, everyone would know where to stand.  The nurse just smiled at me and walked away. I felt like an idiot! I know there is a difference in weight if you stand on the edge of the scale or the middle of it. Thus, it makes a difference as to how much weight you lose on the machine. Well, you know  -  it´s all connected. There should be, at least, a booklet about HD you can read before you go.  Or maybe a good-looking nurse (male, please) to explain it all real slow  ;).  I am glad I´ll soon be leaving there to do PD at home.
Title: Re: Inadequate Patient Training
Post by: angieskidney on July 27, 2006, 11:03:11 AM
I know the first time I saw the inside of a clinic, I cried! I knew nothing of what was going to happen to me. My Dr. didn´t know how to explain it well and just left me there to talk to others. I agree that we patients are just pin cushions to most techs. I have a perfect example that happened at the clinic today. I had been noticing that most patients don´t stand in the middle of the scale. (our scale is floor level and can hold a wheelchair). I talked to the nurse on call and suggested that he put a large "X" in the middle of the scale with tape. That way, everyone would know where to stand.  The nurse just smiled at me and walked away. I felt like an idiot! I know there is a difference in weight if you stand on the edge of the scale or the middle of it. Thus, it makes a difference as to how much weight you lose on the machine. Well, you know  -  it´s all connected. There should be, at least, a booklet about HD you can read before you go.  Or maybe a good-looking nurse (male, please) to explain it all real slow  ;).  I am glad I´ll soon be leaving there to do PD at home.
I wish I could go back on PD  :'(

They just told me "you have to go to hemo at noon tomorrow" while I was an in-patient in the hospital. I went ... they hooked me up through my permcath. I didn't have a clue what any of the alarms or settings meant. I felt so alone since I didn't know anyone. Then I befriended Ian who's mom was on a machine and Jamie (http://ihatedialysis.com/forum/index.php?action=profile;u=57) who laughed when Ian would tease me :P.

I really wish they had let me watch a video about hemo dialysis or something ... even now in "self care" I still don't know as much a year later that I thought I would know by now (
Title: Re: Inadequate Patient Training
Post by: kitkatz on July 27, 2006, 06:15:23 PM
We need to write the Patient's Guide to Dialysis Book with handy hints and stuff in it.  We as a group could do it post by post in a separate topic.  Epoman could put it all together and get it published!
Title: Re: Inadequate Patient Training
Post by: angieskidney on July 27, 2006, 06:47:58 PM
We need to write the Patient's Guide to Dialysis Book with handy hints and stuff in it.  We as a group could do it post by post in a separate topic.  Epoman could put it all together and get it published!
Actually that is a great idea! In Montreal Canada 100 patients all posted their stories and it was published by the hospital they were all in. The book was put in the waiting room at my dialysis for anyone to take (a whole box of them) so I have 3 copies of it myself.

I think it is a great idea!
Title: Re: Inadequate Patient Training
Post by: deej on July 28, 2006, 09:27:39 AM
Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?
Title: Re: Inadequate Patient Training
Post by: Hephs-little-lady on July 28, 2006, 09:46:58 AM
Heph & I weren't told anything! He was an emergency admission, they said we need to dialize you or you'll die. They put a temporary catheter in the top of his leg, is it the femoral artery (I think!), wheeled him into the dialysis unit, told me to stay outside for two minutes while they 'sorted' him out then they would call me. They left me for 1/2 an hour, which made it worse as I was hysterical anyway, then showed me in to where Heph was plugged into this machine where I could see his blood in all these tubes. We both cried our hearts out for the whole 3 hours, and the nurses just looked at us as if to say, "What is all the fuss about?" It was awful, noisy, smelled funny and was full of old people who looked half dead! Oh yeah and this guy who kept shouting, "I don't want to be on dialysis, take me off, you can't keep me here." As he rolled around on the bed looking deranged.

I think a booklet by patients or even a video or something would be an excellent idea. I don't think it would have helped us until after at least the first session though as it was all within a few hours of admission. They definitely need something to ease you into things.

Our hospital does run a patient education program for those who are monitored and know they will be starting dialysis though which apparently is very good. They have a lot of input from patients already doing the different types of dialysis as well as from doctors and nurses and stuff.
Title: Re: Inadequate Patient Training
Post by: kitkatz on July 29, 2006, 10:45:24 AM
Poor Epoman I just had to go and get you another project.  Maybe I should collect the hints and put them together and get them published?   Sooooo.....What does everyone think?  Should we put a booklet together to introduce a patient to dialysis?
Title: Re: Inadequate Patient Training
Post by: angieskidney on July 29, 2006, 11:48:24 AM
   Sooooo.....What does everyone think?  Should we put a booklet together to introduce a patient to dialysis?
that would be cool
Title: Re: Inadequate Patient Training
Post by: Epoman on July 29, 2006, 07:00:07 PM
Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?

I know a publisher, I think this idea and is very feasible, and I to think it is a great idea. I have been thinking of writing a book. This could give me the start I need. I was thinking about a book that has actual posts from this site in it.
Title: Re: Inadequate Patient Training
Post by: angieskidney on July 30, 2006, 11:45:43 AM
Great idea  8) for a book or pamphlet.  Does Epoman agree to put it all together? Where would we publish how ($)?

I know a publisher, I think this idea and is very feasible, and I to think it is a great idea. I have been thinking of writing a book. This could give me the start I need. I was thinking about a book that has actual posts from this site in it.

You should name it "I HATE DIALYSIS" ;) Man would that EVER bring even MORE recognizability to your site :P
Title: Re: Inadequate Patient Training
Post by: kitkatz on July 30, 2006, 11:44:37 PM
I had a good post all ready to go here, then the great white internet shark came through and ate it all up!
Epoman if you need help with the book let me know.  I will help as I can, if there is anything you want me to do.
Title: Re: Inadequate Patient Training
Post by: Bajanne on July 31, 2006, 05:35:39 AM
I am applying for the post of proofreader.
Title: Re: Inadequate Patient Training
Post by: goofynina on July 31, 2006, 05:48:49 AM
*grabs stapler and hot glue gun*   I can staple OR hot glue the pages together,,,,, your choice, only cost you 2 Tito's Taco's,  cuz the only thing better than a tito's taco is 2 tito's taco's,,,,,
Title: Re: Inadequate Patient Training
Post by: kitkatz on July 31, 2006, 10:48:07 PM
Gee, and here I was offering to help for free.  Allright now, if Goofynina is getting Tito's tacos I want something, too! 
Title: Re: Inadequate Patient Training
Post by: Epoman on August 02, 2006, 12:07:41 PM
I will start a new thread on this subject. "THE BOOK"
Title: Re: Inadequate Patient Training
Post by: livecam on August 02, 2006, 12:44:19 PM
Patients who are interested are going to learn all they need to know about dialysis.  Then there are those who just go because there is no other alternative and who could care less. Asking questions at the unit is a good way to start.  Ask to see your labs and treatment reports to further understand what is happening.  This website for those who can access the internet is one of the finest tools I've ever seen for understanding the whole gamut of kidney disease from all perspectives.  What a blessing it would have been to have this site available when I was new and very afraid of what was happening and didn't know when something better might happen.  Internet access should be offered in every dialysis unit where it is feasible and that is most of them.  If I had to do this all over again I would pay for monthly broadband at the unit if it wasn't already there.  It would be really cool to make pc's available at every chair that would like one. 
Title: Re: Inadequate Patient Training
Post by: angieskidney on August 03, 2006, 01:10:28 AM
that would be cool :)

but when I asked my nurse about my labs and what the numbers meant and all .. they always ask, "Why do you want to know?" Which is odd because it is a "Self Care" unit which means I am supposed to learn these things ...
Title: Re: Inadequate Patient Training
Post by: goofynina on August 03, 2006, 01:38:15 AM
I feel the same way,  i wish this site was there for me when i first started dialysis 3 years ago.  Who knows, i may have had more posts than Angie..... nah,  what am i thinkin???  lol ;)
Title: Re: Inadequate Patient Training
Post by: angieskidney on August 03, 2006, 01:59:21 AM
Who knows, i may have had more posts than Angie..... nah,  what am i thinkin???  lol ;)

:P

Naw I didn't just start dialysis myself. I have been on dialysis the last 5 years and my first time was back in 1990. This is just my first year on Hemo (well since July 2005). :P

I am just  addicted to this site ;)

And am a chatterbox.. and one who posts smilies a lot with every post as well ;)
Title: Re: Inadequate Patient Training
Post by: rnrick on August 04, 2006, 10:58:39 AM
I work in dialysis at the National Institutes of Health and we have a lot of information available on-line by NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases). Specifically on hemodialysis, check out http://kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis/. There is also information on PD, transplant, diet, etc. It does tend to be a bit dry, though. I think a pamphlet written by patients for patients about what to expect is a great idea for new patients.

There used to be a set of videos called 'People Like Us' that was sponsored by Amgen (the makers of Epogen). They no longer are sending them out or making them, but they were great. They interviewed nurses, doctors, dieticians, and most important patients and their families on a variety of topics (diet, PD, hemo, coping. etc). I called a while back to get the series and they told me it is no longer being produced. It's a big loss.
Title: Re: Inadequate Patient Training
Post by: Bajanne on August 04, 2006, 01:01:26 PM
mrick, it is nice to have you with us.  We always appreciate having people who actually work in this field being part of our community.  However, we would like you to introduce yourself, in the Introduce Yourself section (where else?)  Please go to your profile and let us know if we are dealing with a lady or a gentleman.
I look forward to you sharing more with us.  hope you give us some ideas for our book.
Title: Re: Inadequate Patient Training
Post by: angieskidney on August 04, 2006, 09:53:09 PM
oh good link Rick (at least I assume rnrick means you are a male dialysis nurse)! I am checking it out now!!  :D

Actually I have a VERY important question and it IS relevant to this thread as I am a patient who is NOT getting the adequate training on this area.

Quote
Some people prefer to insert their own needles. You'll need insertion training to learn how to prevent infection and protect your vascular access. You may also learn a "ladder" strategy for needle placement in which you "climb" up the entire length of the access session by session so that you don't weaken an area with a grouping of needle sticks. An alternative approach is the "buttonhole" strategy in which you use a limited number of sites but insert the needle precisely into the same hole made by the previous needle stick. Whether you insert your own needles or not, you should know these techniques to better care for your access.

I am not YET learning the buttonhold technique. My fistula is STILL NEW. Yet .. they ARE grouping the needle sticks all together with 15gauge needles .. and my fistula HAS been blowing up. So far .. the last 3 weeks ... 5 blow ups.
Title: Re: Inadequate Patient Training
Post by: rnrick on August 08, 2006, 01:13:03 PM
I know it's frustrating, but the fistula does tend to infiltrate (blow up) when it's new. They start out very fragile, but once they get a little bigger and stronger you will have much less problems than a graft or catheter. Do you have a catheter also? Maybe they could use the fistula to pull (arterial) and the catheter to return (venous). That is often used while the fistula strenthens.

I don't know much about the 'buttonhole' technique, but what I read sounds promising, especially if you are going to stick yourself. Epoman describes it well in his blog documenting his home hemo training. The technique fell out of fashion for a while, as did fistulas, but is making a comeback. Sometimes the old fashioned way turns out to be better.
Title: Re: Inadequate Patient Training
Post by: angieskidney on August 08, 2006, 10:42:24 PM
Do you have a catheter also? Maybe they could use the fistula to pull (arterial) and the catheter to return (venous). That is often used while the fistula strenthens.

I don't know much about the 'buttonhole' technique, but what I read sounds promising, especially if you are going to stick yourself.

Yes, I still have my catheter. On Monday they used it not just to pull but return as well and I was very surprised. The nurse I had took one look at my arm and said "okay, we are going to give this one a rest for today". Let me tell you, I was VERY happy about that. Surprisingly my machine didn't alarm at all like it used to when they used my catheter. It was a good day :) I forgot how fast the run back is though with the catheter compared to the fistula lol :-[
Title: Re: Inadequate Patient Training
Post by: needlebearer on August 15, 2006, 05:58:50 AM
. I agree that we patients are just pin cushions to most techs.



Ouch.  I hate that you have had experiences that cause you to say that.  I hope my patients don't feel that way about me.
Title: Re: Inadequate Patient Training
Post by: swconcern on August 17, 2006, 10:22:29 AM
I am a social worker in two clinics and wanted to get some input regarding educating new patients from you who are experts. This is my favorite part of my work is to be with the new patients when they come in, to welcome them and ease some fears and anxieties. I have always tried to have the patients and their families come in before their first treatment to tour the clinic and explain the process. However, only in my experience, the patients (probably for many reasons) are not available or wish to come in prior to the first day. Probably not feeling well after being discharged from the hospital or it is more of an emergency situation that they need to be dialyzed asap and there is no time. (If the patient is being followed by a nephrologist for several months before, sometimes the family and patient come in to tour the clinic.) I have the new patients come in 1 hour before their treatment to complete the paperwork and always offer them a choice of two videos to watch at home, but a majority of the time, I am turned down. Would this be more effective if given the option while in the hospital instead?  Then I tour the clinic with them and sit with them during first few minutes after being on. I do want to address the posting about social workers teaching about the process of dialysis. I am more than able and willing to address questions re: accesses, process of dialysis (simplistically), coping, etc. However, I myself have never been trained to run a dialysis machine and therefore have no expertise about the alarms, etc. I would suggest to ask the nurses and PCTs because they are the experts. You can ask your social worker to have a nurse come explain when she has time enough to thoroughly answer all of your questions. I also continue to spend time with the patients during the next few treatments to continue the education because I have noticed that most patients that come in initially are not feeling well and it might not be the best time to bombard them with all the information that is available. So I try to spread it out some so it is less overwhelming. I am open to any suggestions you might have to when the information is most beneficial.  Thanks in advance!
Title: Re: Inadequate Patient Training
Post by: angieskidney on August 17, 2006, 10:36:33 AM
always offer them a choice of two videos to watch at home, but a majority of the time, I am turned down. Would this be more effective if given the option while in the hospital instead? 


Yes because time in the hospital can be boring so patients might be more willing to watch them ;)

You should introduce yourself (http://ihatedialysis.com/forum/index.php?board=14.0) ;) (click link)
Title: Re: Inadequate Patient Training
Post by: Hawkeye on August 17, 2006, 12:57:06 PM
I would suggest to ask the nurses and PCTs because they are the experts.

It is good that you are helping the patients to the best of your ability and directing them to others for questions you can't answer, but you are directing them to the wrong people.  The nurses and the PCTs can tell what is alarming and what that alarm is, but they can't tell you why.  In my experience as an Equipment Technician the PCT's and Nurses all say the machine is faulty or not working right.  This is sometimes the case, but the majority of the time it's not.  They need to look at a few basic things to keep from scaring the patient into believing there is always something wrong with the machines at their location.  I have made several PCT's and Nurse look like fools because of this ignorance problem.  They call me to the floor and I can usually get the machine to work with no problems in a few minutes.  One of the biggest problems and the hardest to get the PCT's to admit or change is their stick.  If the stick is not done well or properly the machine will alarm like crazy.  Usually though a PCT has made changes to the machine settings or configuration and that is causing the problem.  If you are on a Fresenius 2008K and you are using Fresenius 160, 180, or 200 dialyzer your machine needs to be set for High Flux ON to work properly, non-Fresenius dials may work differently.  This setting can be found on the Test & Options screen below the Pediatrics selection.  Unless your 2 years old the pediatric feature should be off.   These are 2 of the repetitive problems, the other 2 are the dialyzer holder being raised or lowered and the Hanson Lines being twisted.  If the dialyzer holder is moved too far down or too far up from where it was calibrated at the machine pressures will be wrong and TMP and flow errors may occur.  If the hanson lines are twisted the float located in the line cannot move up and down properly, this will cause flow errors too.  Ok, enough machine 101.
Title: Re: Inadequate Patient Training
Post by: okarol on September 13, 2007, 06:40:16 PM
I wish I knew more about Jenna's machine. It's pretty scary to see the blood flowing through the lines and not know how much is taken out at a time, or what all the readings and adjustments meant. The tech's were very low-tech -- they could barely explain what was going on. I think a basic explanation of how the machine worked would have been helpful at the start.

As far as self-care - Zach explained to me about how he was taught self-care early on as a dialysis patient - if you see this Zach - it would be interesting to see you post about what you mentioned to me.
Title: Re: Inadequate Patient Training
Post by: Adam_W on September 13, 2007, 08:48:22 PM
I'm surprised I missed this thread. When I first started dialysis in the hospital, I actually received an unusual amount of education. I got to watch a video showing all the different modalities of treatment (in-centre, both kinds of PD, home hemo, and transplant), and during one of my treatments in the acute unit, the equipment tech was right there to answer any questions I had about the treatment or the machine. I didn't really ask much because at that time I was really sick, but it was nice to have someone willing to educate. That changed when I started at the outpatient centre. Most of the staff, although they were nice, didn't have any desire, or really any ability to educate patients about what was going on. There was really just one nurse and one tech who really tried to educate and answer questions. I learned some stuff from them, and the rest I had to research and find out myself. I found it strange and a little sad that some of the techs had to ask ME how to do something on the machine. They're supposed to know this stuff themselves. Maybe that's part of the reason I got so upset when I couldn't do anything myself at that centre. I guess I just didn't trust the skill of the "professionals." Oh well, I'm where I belong now, dialyzing at home on my spiffy little NxStage machine. I'd still like to advocate for patient education for others, though.

Adam
Title: Re: Inadequate Patient Training
Post by: Redbomb on September 14, 2007, 12:33:27 AM
Adam,

I'm glad you missed this, because if you hasn't, I would have!  This is an awesome thread.

My center has regularly scheduled Classes, once or twice a month, where about 20-25 New Patients to be, come in and are treated to a full day of talks, seeing a film, going through the different options for dialysis and Touring the Center.

The best part of it, for me, was the 2.5 hour lunch where they brought in a panel of 3 current Patients.  One on Home-Hemo, one on In-Center and one that was doing PD.  They each gave a short 5 minute talk about their experience and then it was thrown open to questions from the floor, and these three would answer the questions.

BUT that was three years ago!  I know so much more now, that I want to go back through that class so  I can ask the RIGHT questions this time around!  :)
Title: Re: Inadequate Patient Training
Post by: Hawkeye on September 14, 2007, 08:48:20 AM
I found a link from The Renal Network that send you to a 100 pg guide called "LIVING WITH KIDNEY DISEASE: A PATIENT MANUAL".  Because of it's size I obviously can't just copy and paste it or attach it.  It seems to be a very good guide and can give plenty of info to people in all ranges of dialysis experience.  You can find the guide at www.therenalnetwork.org/images/NewPatientManual.pdf (http://www.therenalnetwork.org/images/NewPatientManual.pdf) .  It is a bit outdated since it is from 2002 but it is still full of usefull information.
Title: Re: Inadequate Patient Training
Post by: sharker1121 on May 22, 2008, 05:58:45 PM
I work at FMC. We have a good rapore with our Physicians and our surgeons. When someone finds out they may need or need to start dialysis we set up an appointment with our education department. The patient will come to our unit and meet with our education department and learn all about dialysis and what they may experience then we give them a tour of our unit.  Then after the patient starts the education department comes back while the patient is on the machine to see how they are doing and if there are any other questions. When a patient  starts their first TX with us we explain everything step by step that we are doing, so if they have any questions at that time we can answer them as well.