I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Centers => Dialysis: Workers => Topic started by: okarol on December 02, 2006, 10:22:44 AM

Title: From the Chair - what it's like
Post by: okarol on December 02, 2006, 10:22:44 AM
I searched and cannot see if this has been posted before. If it has, my apologies.

"From the Chair"
By Lori Tate, BSW.
 (Lori is a social worker with Renal Care Group in Brookhaven, McComb and Mendenhall, Mississippi.)

It all began Thursday, May 13, 1999.  I was relaxing in one of the empty dialysis chairs, talking to patients who were getting off dialysis. I thought to myself "this isn't so bad; why do they complain so much?" Immediately my brain took over; my next thought was "What if I couldn't get up?"

What happened next is hard to tell, it all came into being so fast. I made a decision that would change my life. I decided I would come to the unit on my day off and pretend to be a patient. The nurses, of course, were excited about the idea and all joined in making the experience as real as possible.

First I would weigh with 4 bags of saline (comparable to a weight gain of 4kilos). Secondly, I would sit in the dialysis chair and the saline bags would be placed on me. The bags would be placed on each leg and two in the chest area.  Finally, one bag would be removed each hour. Yes, I agreed to sit in the dialysis chair for 4 hours on my day off! It all seemed like such a good idea for a social worker. I would gain so much empathy for the patients! I was excited! I was feeling great about myself. I'll be honest and admit the words "Super Social Worker" did come to my mind.

However, less than an hour later, I began to think of all the things I needed to do during the weekend. How could I get it all done and still have time for my pretend dialysis?  This is when I began planning my escape. How can I get out of this? How am I going to be still that long? It's not like it's the real thing anyway.

No! I've made a commitment. I've opened my big, fat mouth and now I have got to do it!

Friday, May 14th, 1999.  I spoke with the charge nurse and he explained I would need to arrive at the clinic promptly at 11:30 am. Later in the day, I requested a morning chair. I could get so much more accomplished if only I could get an early chair. However, the charge nurse informed me there were no early seats available. Can you imagine? A fellow employee, we work together! I've helped him out thousands of times. Everyone knows they (nursing staff) simply use the social workers to do all the things they would rather not do. Enough whining, the nurse said 11:30 am. I will be here at 11:30 am.

The big day arrived. At 11:30 am, I was awaiting my turn on "the machine”. Of course, I was not seated until 12:00 (noon) and not completely “hooked up" until 12:10 pm. With saline bags in place, books to read and other patients to talk to, I was ready to begin. The only problem was, I had only been in the chair for fifteen minutes and I was ready to get up. Other things that came to my mind while on the chair were: "These fluid/saline bags feel so heavy", "I am so cold sitting in this chair", "It doesn't feel this cold when I am working", "Is my butt numb?” "I can't move my legs, they’ve fallen asleep". "What machine is beeping?" "I know how to hit the reset button, however, I cannot help because I cannot move". "I wish I could change arms, I'm tired of keeping this arm still." My blood pressure was actually low while" on the machine", I began to wonder, "What does this mean?" "Am I okay?" "Hey nurse, come here!"

It was also unusual to be sitting that low in the chair. When you are seated in the dialysis chair, because of the placement of the unit, you are unable to see anyone who isn't on your side of the room. I knew which nurses were in the unit, however, I couldn't see them from where I was sitting. Also, due to the placement of the machines, I couldn't see anyone on my left. I could only speak with the patient seated directly in front of me, or the patient directly on my right.

Finally when my four hours were up, I did not want to talk to anyone. I had been sitting so long; I just wanted to go home. I felt differently about the experience than I thought I would. I honestly had not been concerned. I was going to teach patients something by my good example. However, they taught me a lot. All of my feelings can be multiplied by a million. I was not stuck by a needle. I did not watch my own blood come out of my body and go through a little tube. I did not have the fear of having to sit in that chair for the rest of my life because my kidneys were no longer functioning. I did not become sick and vomit in front of twenty people. I was able to think about what I would have for supper when I got home, instead of sitting and thinking about all the things I couldn't have.

I did gain a great deal of respect and admiration for the patients. I did not gain any further empathy, as the one thing I fully understand is that I will never fully understand or know what it feels like to be a dialysis patient, unless one day I am one. I can only hope this experience allows me to be more compassionate and more apt to treat patients with the human dignity I know everyone deserves. I also hope that some of the staff members who were working the day I sat in the chair for 4 hours will take the time to stop and think to themselves, "What does it feel like, from the chair?"

-- END --
Title: Re: From the Chair - what it's like
Post by: jbeany on December 02, 2006, 10:30:50 AM
Sounds to me like this ought to be a requirement for job training in a clinic!
Title: Re: From the Chair - what it's like
Post by: Sluff on December 02, 2006, 10:43:13 AM
Everyone should post this at their clinic.
Title: Re: From the Chair - what it's like
Post by: Zach on December 02, 2006, 10:54:18 AM
Thank you for the post okarol !!  Great story -- all patient staff should read it.
 :beer1;
Title: Re: From the Chair - what it's like
Post by: Jill D. on December 02, 2006, 01:01:08 PM
Everyone should post this at their clinic.
I totally agree.
Title: Re: From the Chair - what it's like
Post by: Black on December 02, 2006, 01:09:45 PM
Sounds to me like this ought to be a requirement for job training in a clinic!

ITA!! and thanks, Okarol, for posting this!!
Title: Re: From the Chair - what it's like
Post by: goofynina on December 02, 2006, 05:20:47 PM
OKarol,  where do you find your stories?  They are all so meaningful and mostly inspirational,  thank you... :thx;
Title: Re: From the Chair - what it's like
Post by: tubes on December 02, 2006, 06:15:23 PM
 :2thumbsup; what a great social worker to do that.
i agree.  everyone should post this at their clinic.
Title: Re: From the Chair - what it's like
Post by: susie q on December 02, 2006, 06:15:42 PM
Good stuff... thanks for sharing..  :2thumbsup; :clap;
Title: Re: From the Chair - what it's like
Post by: Fox_nc on December 03, 2006, 07:47:39 PM
Sounds to me like this ought to be a requirement for job training in a clinic!

Everyone should post this at their clinic.

Hear! Hear!  Maybe I'll print a couple copies and secretly leave them in various parts of the clinic . . .
Title: Re: From the Chair - what it's like
Post by: Nan on December 03, 2006, 10:07:41 PM
I love what you have to offer, yes they are inspiring.....thank you!
Title: Re: From the Chair - what it's like
Post by: okarol on January 14, 2007, 01:10:00 PM
It just boggles my mind -- this account was written nearly 8 years ago,
but little has changed. Some clinics have really good staff, but too many
have employees who don't have a clue what the patient goes through.

Here's another  article - posted in 1998 on the FDA govt. website - does not seem
to be updated since then - and few changes have occured since then for
dialysis patients, even though great strides have been made regarding kidney
transplantation http://www.fda.gov/Fdac/features/1998/198_dial.html
Title: Re: From the Chair - what it's like
Post by: Zach on January 14, 2007, 03:27:33 PM
It just boggles my mind -- this account was written nearly 8 years ago,
but little has changed. Some clinics have really good staff, but too many
have employees who don't have a clue what the patient goes through.

Here's another  article - posted in 1998 on the FDA govt. website - does not seem
to be updated since then - and few changes have occurred since then for
dialysis patients, even though great strides have been made regarding kidney
transplantation http://www.fda.gov/Fdac/features/1998/198_dial.html


While they may not be significant to some, there have been changes for the better for those on hemodialysis since 1998.  The article doesn't cover the improvements in the machines, dialysis filters and medications, as well as the better understanding of the nutritional requirements of hemodialysis patients.

The current problem with long term transplant --chronic rejection-- is basically the same issue faced back in 1998.  Unfortunately, significant progress is slow for both forms of renal replacement therapy.
Title: Re: From the Chair - what it's like
Post by: okarol on November 19, 2007, 11:59:40 AM
 :bump;
Title: Re: From the Chair - what it's like
Post by: thegrammalady on November 19, 2007, 12:44:20 PM
it amazes me that there is a social worker out there who even made an attempt. as ya'all probably know i don't have a very high opinion of social workers. (somewhere on the list with lawyers and pond scum) having delt with them for over 20 years i can actually say there are only 2 (maybe 3) that i have ever liked. if i knew this one i think i could add her to my list.
Title: Re: From the Chair - what it's like
Post by: willieandwinnie on November 19, 2007, 12:57:10 PM
I think everyone that has anything to do with a dialysis clinic should do what she did. Maybe their minds sets would change. Wishful thinking. Great story Okarol.

willieandwinnie
Title: Re: From the Chair - what it's like
Post by: goofynina on November 19, 2007, 03:01:01 PM
I wonder if our one and only KT = Kent Thiry from Davita, has ever done this?  :urcrazy;  yah right, he couldnt hang  :thumbdown;
Title: Re: From the Chair - what it's like
Post by: Adam_W on November 19, 2007, 04:37:08 PM
I wonder if our one and only KT = Kent Thiry from Davita, has ever done this?  :urcrazy;  yah right, he couldnt hang  :thumbdown;
He's probably never even set foot in one of his own centres. Must.......resist.........KT rant! Ahh, I'm good now.

Adam
Title: Re: From the Chair - what it's like
Post by: paddbear0000 on November 21, 2007, 12:22:58 PM
Now if only there was a way to actually hook them up to the machine!  ::)
Title: Re: From the Chair - what it's like
Post by: KT0930 on November 23, 2007, 08:35:42 AM
Now if only there was a way to actually hook them up to the machine! ::)

Make them experience the cramping!!

Everyone should post this at their clinic.

As I was reading I was considering printing it and giving it to my SW.
Title: Re: From the Chair - what it's like
Post by: okarol on December 07, 2007, 11:16:12 AM

Now if only there was a way to actually hook them up to the machine!  ::)


I keep thinking about this. Talk about experiencing the reality of dialysis!  :-\

Title: Re: From the Chair - what it's like
Post by: WBMW on December 07, 2007, 11:47:02 AM
thank you for sharing this.

Title: Re: From the Chair - what it's like
Post by: okarol on March 03, 2008, 03:08:22 PM
 :bump;
Title: Re: From the Chair - what it's like
Post by: okarol on July 25, 2008, 09:10:44 AM
 :bump;
Title: Re: From the Chair - what it's like
Post by: monrein on July 25, 2008, 02:43:59 PM
The social worker who wrote that IS a super-social worker because she recognized something she actually didn't know and did something about it so that she could better understand her clients' points of view.  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 but nonetheless, she gets my  :clap;
Title: Re: From the Chair - what it's like
Post by: Zach on July 25, 2008, 08:08:28 PM

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!
 
8)
Title: Re: From the Chair - what it's like
Post by: twirl on July 26, 2008, 01:01:25 AM
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
Title: Re: From the Chair - what it's like
Post by: Kitsune on August 13, 2008, 12:33:03 AM
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. :sir ken;
Title: Re: From the Chair - what it's like
Post by: monrein on August 13, 2008, 12:45:54 AM
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.


Title: Re: From the Chair - what it's like
Post by: Chris on August 13, 2008, 02:12:15 AM
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.
Title: Re: From the Chair - what it's like
Post by: twirl on August 13, 2008, 03:18:21 AM
if my butt could talk --- during the 3rd-4th hour ----- would she get an ear full-----
Title: Re: From the Chair - what it's like
Post by: pelagia on August 13, 2008, 06:09:08 AM
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? 
Title: Re: From the Chair - what it's like
Post by: okarol on March 28, 2009, 09:09:00 PM
 :bump;
Title: Re: From the Chair - what it's like
Post by: okarol on February 25, 2010, 03:38:11 PM

This has been on the forum for awhile, bumping it up. :bump;
Title: Re: From the Chair - what it's like
Post by: galvo on February 25, 2010, 06:55:47 PM
A nurse said to me the other day "We know what you're going through!". Oh Yeah!!!!!!!!!!!!!!!!!
Title: Re: From the Chair - what it's like
Post by: calypso on February 26, 2010, 11:35:45 PM
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.
Title: Re: From the Chair - what it's like
Post by: monrein on February 27, 2010, 04:59:39 AM
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?
Title: Re: From the Chair - what it's like
Post by: okarol on June 29, 2010, 12:43:13 PM
 :bump;
Title: Re: From the Chair - what it's like
Post by: Riki on July 17, 2010, 07:30:28 PM
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.
Title: Re: From the Chair - what it's like
Post by: okarol on November 01, 2010, 04:37:47 PM
 :bump;
Title: Re: From the Chair - what it's like
Post by: Karlise13 on March 19, 2014, 12:07:01 PM
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.
Title: Re: From the Chair - what it's like
Post by: cattlekid on March 19, 2014, 02:40:54 PM
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.
Title: Re: From the Chair - what it's like
Post by: okarol on March 29, 2014, 07:23:48 PM
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.



 :2thumbsup;
Title: Re: From the Chair - what it's like
Post by: Jean on March 29, 2014, 11:32:44 PM
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.