Early dialysis education, part 1

I’ve asked a few of my patients this question:

When you first started your very first dialysis treatment, did you know what was going to happen to you?

It’s a simple question, really, one that gave me a pretty interesting scope of what actually happens before a dialysis patient becomes a dialysis patient.

That very first treatment is so critical, it has to be so overwhelming, I can not even imagine. 

If kidney failure is documented early on, things are put into place, diet plan to follow, social worker talks to you, vascular access is discussed, mapping done and surgery scheduled.  You are given instructions by a doctor, who has years of medical training, years in intership and years of being a resident.  Years that most of us don’t have, not only is he giving you this information but then you were just told by a skinny, pasty dietician (face it, peeps all renal dieticians are thin and pasty, I chalk it up to not enough red meat) that everything you were taught by your mother is wrong. 

Eight glasses of water a day? Not on dialysis.

Fruits and vegtables? In moderation and all night shade plants are BAD, BAD!!

You need more protein, MORE RED MEAT!!!  EAT THE MEAT!

Then of course, if you were paying attention after that little tidbit, they would slide in the fact that anything that melts at room temperature is in fact a liquid and probably not a good idea to gorge on if you aren’t peeing a whole lot.

So there is this massive amount of information, your brain is swimming.

Then as things get worse, uremia builds up, you get sick, you end up in the hospital.  Dialysis usually starts there, a nurse comes in with a big machine, a portable reverse osmosis machine.  The first couple dialysis treatments aren’t memorable, partly because you’re drugged up and partly because it’s just you and the nurse.

Then you stablize and you’re sent to GASP! The clinic.

The clinic is a big room, there is beeping and weird mechanical sounds.   A mass of white gobs drift past you with purple gloves and face shields on.  We carry bloody tubing from a machine to a container where more bloody dialyzers are.  We ask you weird questions, then some personal questions, we make you weigh in front of a bunch of other people, then tell you it needs to be in kilos.  We sit you down, we do all these weird things to you then we break out the flippin needles!

NEEDLES?  No one told me about needles!

Guess how many times I have heard that, more times then I care to admit.

So what is my point?

I think we do things wrong.  I think a lot of the anger and control issues that are part of the dialysis process come from the fear of the unknown.  So what if we took that away, what if we sat you down in stage three or four, before dialysis was a part of your daily life.

What if we had a nurse, a dietician, a social worker, a dialysis tech and an actual patient who is on hemodialysis in-center and had a “this is what it is” dialysis chat.  We told you what was going to happen to you, what the routine was, transportation issues, and family issues. 

What if you were given insider knowledge from a patient who was living a “normal” life.  Who was conquering this disease and thriving?  Who had a job, a family and was able to make this a part of their routine not the ruler of their life?

Would this give you hope?

Would this make your first treatment in this scary place, we call the clinic, easier?

Dialysis clinics need to more then just treatment centers, they need to be Patient Advocate Centers.  We need to give you a push into the right direction.  You have so many things you have to worry about, money, relationships, job security, whether or not your significant other can handle this change in you. 

The last thing a patient needs is to worry about what the hell the techs are going to do to their arm.  Some dialysis companies have these programs, but most do not, this needs to be mandatory, we need to find ways to make this available to EVERYONE, not just those select few.

This has become my new passion, people, I’m tired of watching people fall into that dialysis pit o’depression because the new info is too overwhelming.  These are lives, we need to be advocates of our patients not just there to collect a pay check.


~ by Kim on August 19, 2008.

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