From the Chair - what it's like

[Zach]

They could have put in an IV that required keeping an arm dead straight for four hours, just to provide a bit more authenticity to the experience ...

Excellent addition!
 

[twirl]

don't even

get back with me----- when you have real needles stuck in an already sore arm, when you have to poo and the techs are too busy or too uncaring to let you off, when you are gagging or vomitting, when your butt has been sore for three hours already, when it is time to get off and you have to sit there for extra time, when you know you will be back again and again and again, when you are treated like G-Ma was and you feel humiliated, when everyone on your shift knows more about your medical condition than your spouse does, you cramp, you infiltrate------
then we can talk

[Kitsune]

Yeah, this social worker doesn't know jack about being on dialysis. She merely sat in chair for four hours with needles taped to her arm and 4 bags of saline on her.

She knows nothing about being treated like a child by condescending staff, or about monthly doctor visits, or the fear that she will die on the machine, or having needles in her arm, or about having to go to the bathroom so bad your teeth float while the tech refuses to let you off because they're convinced you'll "dawdle", or the vomiting, or the cramping, or the loss of libido, or having to go there 2-3 times a week, knowing that you'll probably die before too long because you have a rare blood type and few people of that blood type are donating kidneys, or the renal diet, or having your BP drop so low or go so high that you feel like you'll die, or the dry throat you get from dialyizing, etc.

But, she sat in a chair with saline on her body, needles taped to her arm and books to read. Yeah, she gets it, uh huh.

[monrein]

I really want my nurses to try to understand what we go through and I feel that the ones in my unit do "get it".  They've been in the field a long time and are extremely sympathetic to our plight and treat us (even the not-so-great ones of us.....and yup nasty, rude, miserable  dialysis patients do exist too, although I don't necessarily blame them for this) very well indeed.  I don't want them to be sick or on dialysis so they'll get it more.  I don't want anybody to be on dialysis.  Not me, not anybody.  I want bad techs and nurses fired, not dialyzing next to me.  A good social worker, doctor or any person doesn't have to have first-hand experience with every situation to "get it".  They just have to keep on trying their level human best to make things as easy for me as is humanly possible and they also have to be competent, conscientious and committed to continued learning in the renal field.

[Chris]

Why not one of those temporary Quinton Catheters. May not be needles, but will giver her some feeling of the processes. Then they could use it as a PR tool. Also could inserted an I.V. of Saline, heck make it two and put it by they elbow so if she moved, the IV alarms will go off.

[twirl]

if my butt could talk --- during the 3rd-4th hour ----- would she get an ear full-----

[pelagia]

What can be done to change the system?  There is strength in numbers and this is a big community.  A campaign focused on legislators?  I am happy to help in any way I can.  I don't have first hand experience with dialysis, but I have taken issues "on the Hill" and I can do research and write talking points.  Can anyone here imagine an IHD meeting in the DC area with individuals visiting their congressional representatives to discuss these issues? 

[okarol]

 

[okarol]

This has been on the forum for awhile, bumping it up.

[galvo]

A nurse said to me the other day "We know what you're going through!". Oh Yeah!!!!!!!!!!!!!!!!!

[calypso]

I would have been more impressed if they had made it a bit more realistic. As in made the pseudo patient donate some blood through two 15 gauge needles.

[monrein]

I would have been more impressed if they had made it a bit more realistic. As in made the pseudo patient donate some blood through two 15 gauge needles.

Except that I don't think you could shove 15 gauge needles into a vein and the arteries are too deep to access.  I think that creating a fistula in someone not needing D might be a tad extreme.....no?

[okarol]

 

[Riki]

I don't think it was a bad idea, I mean, she did say that it wasn't completely authentic, but it is more than a lot of dialysis workers will do.  I intend on printing this and giving it to the nurses at my unit.  I think they would actually enjoy it, and probably take it's message to heart.

[okarol]

 

[Karlise13]

I have so much respect for the social worker who put herself through this.  During my training (I am a renal dieititian) they had us do an exercise where we had our dominant arm taped to the table. We had to keep it in that position for a half hour. That doesn't sound hard at all, right? During that half hour I was DYING to move my arm. Tell someone they can't do something and they immediately start thinking about it! Suddenly I had to scratch my nose, I wanted to write notes, I just wanted to MOVE. Having my arm taped down taught me a lot about how uncomfortable it is to keep still for even such a short time. The fact that the social worker actually sat for four hours in a dialysis chair, on her day off, makes me think. This should be required reading for all staff who work in a dialysis center.

[cattlekid]

Here's what I think training should be for a renal dietitian, based on the experiences I had with my dietitians:

Two months on the renal diet, bonus points for diabetic renal
One of those months should be over the Thanksgiving/Christmas holidays, bonus points if you travel or have family visiting
You have to continue to work full time during this period, plus you have to block out 12 per week hours for the time you would be at dialysis, plus at least 10 hours for sleep on the dialysis days (3 days a week, you can include your regular sleep time on those days but the total has to be at least 10)
You must do all of your own planning, shopping, cooking and cleanup
No restaurants, no prepared foods. 

If you can do all this without cheating for two solid months, then you are ready to be a renal dietitian.

I have so much respect for the social worker who put herself through this.  During my training (I am a renal dieititian) they had us do an exercise where we had our dominant arm taped to the table. We had to keep it in that position for a half hour. That doesn't sound hard at all, right? During that half hour I was DYING to move my arm. Tell someone they can't do something and they immediately start thinking about it! Suddenly I had to scratch my nose, I wanted to write notes, I just wanted to MOVE. Having my arm taped down taught me a lot about how uncomfortable it is to keep still for even such a short time. The fact that the social worker actually sat for four hours in a dialysis chair, on her day off, makes me think. This should be required reading for all staff who work in a dialysis center.

[okarol]

Here's what I think training should be for a renal dietitian, based on the experiences I had with my dietitians:

Two months on the renal diet, bonus points for diabetic renal
One of those months should be over the Thanksgiving/Christmas holidays, bonus points if you travel or have family visiting
You have to continue to work full time during this period, plus you have to block out 12 per week hours for the time you would be at dialysis, plus at least 10 hours for sleep on the dialysis days (3 days a week, you can include your regular sleep time on those days but the total has to be at least 10)
You must do all of your own planning, shopping, cooking and cleanup
No restaurants, no prepared foods. 

If you can do all this without cheating for two solid months, then you are ready to be a renal dietitian.

 

[Jean]

Karol, thank you for keeping this post alive. I learned a lot just by reading it. Wonder what happened to the SW who sat in the chair. Too bad it is not on the training list for all dialysis workers.