Dialysis Education

[kitkatz]

A friend and I were discussing the education of dialysis patients and we have noticed overall that new patients are not being educated on basic things they need to know.  What are some things you think new patients should know?  Maybe we could develop a brochure of dialysis facts/ questions you need to know now.

Blood work- how to read it.
Diet
Who are all these people and what are they to me as the patient?
What can I expect? What are major types of dialysis?
What are major accesses?
Major resources?


What I see is a whole lot of information given to a new patient as education, but no one really explains what this is like and how it will affect your life.

What would you like to see to simplify something that is basic education for a new patient? Especially coming from an experience patient?

[Simon Dog]

There is a lot of stuff that patients are not proactively taught, for example:

- The settings on the dialysis machine - how to understand them
- Different filters and acid baths
- How to understand arterial and venous pressure readings

And then there is the complete lack of training for potential transplant recipients on EPTS, KDPI, the statistics surrounding kidneys from risk populations; etc.    When patients get "the call" and are told the KDPI of the offered organ, they have to make a decision on the spot, often never having discussed this issue with their neph.    Patients know "older patients get crummier kidneys", but often don't know that an elderly patient is eligible for the exact same kidneys as a 53 year old.

[kristina]

There is a lot of stuff that patients are not proactively taught, for example:

- The settings on the dialysis machine - how to understand them
- Different filters and acid baths
- How to understand arterial and venous pressure readings

And then there is the complete lack of training for potential transplant recipients on EPTS, KDPI, the statistics surrounding kidneys from risk populations; etc.    When patients get "the call" and are told the KDPI of the offered organ, they have to make a decision on the spot, often never having discussed this issue with their neph.    Patients know "older patients get crummier kidneys", but often don't know that an elderly patient is eligible for the exact same kidneys as a 53 year old.

From the very start of facing "my" first dialysis-treatment (December 2014), I have kept a constant "dialysis-diary" which I take with me to every dialysis-session and I write everything down about each dialysis-treatment, from my weight to my BP-readings, settings of dialysis-machine (which setting is best at which time/day etc.) and the effect of different settings etc., different acid-baths etc., how much "water" to take off at which particular day etc. and it all helps me to understand as much as is possible (as a patient) about the whole complicated dialysis-process, in an effort to try and survive my dialysis-treatments as best as I can, whilst (im)patiently waiting for the telephone to ring  for "my" transplant ... I also write into my dialysis-diary whatever the doctor/neph says/mentions, whenever I meet up with them etc., also: whatever I need to ask the doctor/neph etc. and this diary has helped me quite a lot to comprehend the whole process I am going through whilst undergoing dialysis-treatment and it is honestly very recommendable... I also underline (in different colours) certain events during dialysis-sessions i.e. different reactions to different medications, the day when I was activated on the transplant-waiting-list etc. This diary has assisted me to get a better relationship to the whole dialysis-process and it gives me the feeling that I really take part, as much as I possibly can, in my treatment ...
Best wishes from Kristina.

[Charlie B53]

I am not on Hemo.  I am on PD but I do complete my 'logbook' morning and night.   Nowhere near as complete as Kristina is doing, that is amazing and I'm sure can help greatly to stay abreast of how well her treatments are going.

Only problem with my log is every month at Clinic my team takes it, and returns it with NEW blank pages.   Fortunately I am doing very well, so far.   But when/if the day comes I am forced to switch to Hemo I am going to try to do as Kristina and write down everything as there is no way I can remember it all.  Some of the high points, maybe.  But the details make all the difference.

Stay at it Kristina.

[Michael Murphy]

In my 3 years of dialysis I am amazed at the average patients knowledge and the lack of interest they show.  Every month we are given a training package 12 one every month and then they start over again.  I like to read so I read them every month if it hasn't changed I will at least scan it.  Last year there was a possible hurricane alert and a bunch of us were sitting waiting to be served, when the hurricane became the topic, some one asked what would happen if the center was closed and I said I was going to follow the disaster diet, what diet is that I was asked.  The one they gave out last month I replied shocked silence.
   

[Fabkiwi06]

Oh goodness... so much.

Typical medications and what they're for - so if your doctor says you need to be on [blank], you're not completely clueless.
Common "side effects" and overall body changes you might experience - what is considered "normal" and what should you be concerned and head to the ER over.
Diet - everything I find is very much geared towards a diabetic patient... It took a long time to actually get the amounts of things I should be aiming for.
A practical sample menu for a week - the one I got seems to think that applesauce and pillow mints is a sufficient snack.
A list of foods you should NOT eat - like Starfruit. Feel like that should have been mentioned at least once.

Honestly, I wish there had been something in the ER that was brief and comprehensive that I could use for a jumping off point to find my own info. This is what you have. This is what is going to happen. These are your options. You're gonna be ok.

[Dualref]

I recently switched nephrologists and I got a phone call from the new one today telling me I am scheduled to take a 2 hour dialysis class at the local dialysis center on the 15th. The nurse said the doctors want all his new patients to take this class. It's held at the local dialysis center.

[Rerun]

If you are freezing you can ask what the temperature reading is on the machine for your blood.  I like mine at 36.3 but if you don't know you just freeze.  Also expand on the temperature readings because I know you cannot go to high or your red blood cells split and can kill you.  Our unit won't go above 37.

 

[iolaire]

In my 3 years of dialysis I am amazed at the average patients knowledge and the lack of interest they show.  Every month we are given a training package 12 one every month and then they start over again.  I like to read so I read them every month if it hasn't changed I will at least scan it.  Last year there was a possible hurricane alert and a bunch of us were sitting waiting to be served, when the hurricane became the topic, some one asked what would happen if the center was closed and I said I was going to follow the disaster diet, what diet is that I was asked.  The one they gave out last month I replied shocked silence.
   

This is my view on education at my center.  If people don't know or understand dialyses, diet and such its their own choice. 

We get hand outs maybe monthly, there is some sort of check sheet the nurse needs to complete monthly with education topics, this month it was have you scheduled your annual physical, other months its about lab values, or how to return the blood in event of a power failure.  Plus when the labs come back the dietician talks to you if any values are high. 

The Spanish speaking patients get a translator, non Spanish/English/Korean/Filipino speaking patients usually get information translated via their families on the phone.

I've always felt this education must be mandated by Medicare and DaVita.  They try hard.  I'm sure that varies based on the staffing and quality of center management but at least in my center the resources are there.  Also I will say it feels like a good number of new patients show up to my center (with insurance) so they might not be as cash strapped as others.

[kitkatz]

We used to be told to watch training videos available on our TVS, however that has not happened in a few months now.  We also had to sign that we had watched the video each month.  Nothing in the last year or so.  Some centers do not a good job of training patients or making sure information is given out regulalry.

[kickingandscreaming]

I get a little "quiz" each month when I see the PD nurse.  It amounts to a couple of questions, e.g. which PD fluid would you use for X?  It's all very pro forma.  Certainly nothing that I would call an "education" but she gets to check me off the to do list and I have to sign.

[kristina]

I am not on Hemo.  I am on PD but I do complete my 'logbook' morning and night.   Nowhere near as complete as Kristina is doing, that is amazing and I'm sure can help greatly to stay abreast of how well her treatments are going.

Only problem with my log is every month at Clinic my team takes it, and returns it with NEW blank pages.   Fortunately I am doing very well, so far.   But when/if the day comes I am forced to switch to Hemo I am going to try to do as Kristina and write down everything as there is no way I can remember it all.  Some of the high points, maybe.  But the details make all the difference.

Stay at it Kristina.

Many thanks Charlie, I shall continue to try hard and do my very best...
... It is quite amazing to discover to what lenghts we are prepared to go in an effort to survive... 
Best wishes from Kristina. 

[Simon Dog]

Oh goodness... so much.

I had plenty of warning before I started, so I took individual Fresenius training form a nurse who went over the various flavors of PD and HD, as well as the option of non-treatment.   One thing missing was details of what death from non-treatment would be like.

I think they should train patients who are mentally competent to understand the basics of the machine - what the settings are, the different baths/filters, what the various readings are, what are safe ranges for VP and AP, etc.   Unless the patient asks questions or reads on his/her own, that all currently falls into the "trust us, we'll worry about that" category.

As to training - I've been doing home HD for 3 years, and although I have far less training that a tech or RN, I have more experience puncturing my fistula than an RN or Tech would get in decades.

[Michael Murphy]

I really think more than half of my knowledge about dialysis came from this site.

[Charlie B53]

Formal education can only teach just so much. 

There is much to be said in favor of On the Job Training. 

I don't think a classroom can ever teach near as much as the actual experience gained from your years of actually doing it.

I suspect that most of the call-in tech support do not have near the hands-on experience, but the ready access to detailed service manuals that others have spelled out many of the more likely events.

I too keep the manual for my PD Cycler immediately at hand.  And I have twice had to read it to figure out what was going wrong.  Most often a defective cartridge, or operator error.  I'm human.  But I am so anal about setting up my machine that I very rarely make a mistake.  OK, once, in three years.   I think I am doing OK.

[Xplantdad]

Having just  our monthly meeting with the dialysis team and my daughters nephrologist yesterday I brought up some points for them to ponder-my daughters nephrologist was all ears (great guy) and the head nurse at Fresenius immediately got defensive-even after I prefaced what I was going to say with something like , "Since we were the second family trained in your newly started home hemo program...here's where I think that things could be better:

1)  Talked about the minimal training for home hemo patients. I brought up the fact that in center staff get 12 weeks of intensive training and they have to take a test o get their certification. Us on the other hand, got less than four weeks training done 3x a week during dialysis treatments. When we have an issue-we don't have a nurse right there to answer a question-or help during a big issue like they do in center. The response from the head home hemo nurse? "That's why not everyone is suited  for home hemo". I told him that they are asking a LOT from people with minimal training-and why can't they offer immediate assistance by phone like NXStage does-instead of going through a call center. My daughter's nephrologist told the head nurse to shut up and learn (in a nice way)

2) I talked about how they should better explain the pressures (Blood/venous/effluent/arterial)-what they mean and when to be concerned for home hemo patients. Instead of directing us to the NXStage website....Lucky for us, my wife and I asked the tech when my daughter first went on hemo...what they were doing and why...and they were happy to explain, so we were ahead of the game a bit.

3) We talked about letting the families know the SPACE that needs to be set aside for all of the supplies that will be coming their way. This definitely wasn't talked about in our case.

4) They need to really explain what dialysis is for...what it's actually DOING...and what are some of the side effects...i.e. pulling fluid...what to expect, how you will feel...pulling fluid too fast, what to expect, how you will feel, benefits of pulling slower, what to expect, how you will feel, etc. Dry weights, what it is, etc.

5) From day one, we have charted our daughters dialysis sheets, we scan them and have ALL of them saved on our computer for reference if needed.

6) Last one and a big one in my book...and I cornered the nephrologist on this one -you have to speak up for what you believe is right...you have to be an advocate for your health: My message to all yesterday, Treat the patient...don't use the "standard practice"...meaning what's good for the "normal dialysis population" may NOT be good for you or YOUR patient. The head home hemo nurse was SOOO focused on my daughter's in treatment  pulse rate and blood pressures  (They were running slightly high at the end) so they wanted to change all sorts of different things (dry weight, blood pressure medication, length of treatment, etc.)

 I told them hold on...if you are going to change something do them one at a time and we can chart the results...or how do we know the effect that each one has?  End result, I told the Nephrologist that we weren't happy that we were going to modify a bunch of things to satisfy one person due to slightly high readings near end of treatment. I also reminded them that they don't have another patient  that has already had a heart transplant-so she's an individual...and not like the rest!

End result? The head home hemo nurse asked to pursue taking some sort of action to "fix" the readings....and the nephrologist said, "NOPE". Did you not just listen to the dad, you know, the one that's around her 24 hours a day?  He's doing a great job and he's right...sometimes we are all focused on what is correct...but not right for the patient. "

[Simon Dog]

My local clinic is starting a newsletter by the patients.

I've submitted an article on "travel hints" (a few helpful details not in the official recommendations) that has been accepted for the second issue.

My next article is going to be titled "Understanding EPTS and KDPI".

But, my suggestion for an article on the international organ market was met with a lukewarm reception 

And, on another topic - my home hemo training was great, went into detail on the pressure numbers, how to handle emergencies, etc.  The space issue, how you will feel, dry weight, fluid pull, etc. was all covered in detail.

[PrimeTimer]

I think the affect that dialysis has on a person's fluid levels should be explained. Both fluid overload and dehydration should be discussed. This should include how the body uses fluid and how it is retained and then moves (the order and rate) thruout various compartments during dialysis.

[kristina]

I think the affect that dialysis has on a person's fluid levels should be explained. Both fluid overload and dehydration should be discussed. This should include how the body uses fluid and how it is retained and then moves (the order and rate) thruout various compartments during dialysis.

Very good point, PrimeTimer : our quality of life is very much connected to our fluid-levels : and the better we study & understand them, the better our quality of life ...
It seems also important to observe, how much liquid-intake takes place through cooked food and I have noticed that since my input should not exceed one liter per day,
my direct daily drinking-input has to be much less than one liter, because of the liquid-input which comes automatically with the daily food etc.
Best wishes from Kristina.

[Fabkiwi06]

Yes to better education about fluid levels. I had no idea about that - nobody ever mentioned I might need to watch my fluid. Ended up back in the hospital two days after I was originally released due to fluid overload. Have also swung the other direction and been too dehydrated because I was so concerned about it and I didn't want to go BACK to the hospital a third time.

Some of you have touched on it already, but it's true. Unless you're in the trenches with dialysis - either as a patient or a caregiver - you don't really comprehend all the moving pieces at work. Heck, I've been at this for six months now, and I just now am finally feeling like I've gotten the hang of things.