Inadequate Patient Training

[angieskidney]

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 ...

[goofynina]

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

[angieskidney]

Who knows, i may have had more posts than Angie..... nah,  what am i thinkin???  lol

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).

I am just  addicted to this site

And am a chatterbox.. and one who posts smilies a lot with every post as well

[rnrick]

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.

[Bajanne]

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.

[angieskidney]

oh good link Rick (at least I assume rnrick means you are a male dialysis nurse)! I am checking it out now!! 

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.

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.

[rnrick]

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.

[angieskidney]

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

[needlebearer]

. 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.

[swconcern]

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!

[angieskidney]

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 (click link)

[Hawkeye]

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.

[okarol]

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.

[Adam_W]

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

[Redbomb]

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! 

[Hawkeye]

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 .  It is a bit outdated since it is from 2002 but it is still full of usefull information.

[sharker1121]

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.