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Author Topic: From the Chair - what it's like  (Read 17100 times)
okarol
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« 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 --
« Last Edit: December 03, 2006, 10:22:53 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
jbeany
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Cattitude

« Reply #1 on: December 02, 2006, 10:30:50 AM »

Sounds to me like this ought to be a requirement for job training in a clinic!
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Sluff
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« Reply #2 on: December 02, 2006, 10:43:13 AM »

Everyone should post this at their clinic.
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Zach
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"Still crazy after all these years."

« Reply #3 on: December 02, 2006, 10:54:18 AM »

Thank you for the post okarol !!  Great story -- all patient staff should read it.
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Jill D.
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« Reply #4 on: December 02, 2006, 01:01:08 PM »

Everyone should post this at their clinic.
I totally agree.
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
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« Reply #5 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!!
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
goofynina
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He is the love of my life......

« Reply #6 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;
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....and i think to myself, what a wonderful world....

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tubes
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« Reply #7 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.
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"To be happy is the choice I wish to make in spite of the circumstances that are strewn in my path."

1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
susie q
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« Reply #8 on: December 02, 2006, 06:15:42 PM »

Good stuff... thanks for sharing..  :2thumbsup; :clap;
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Fox_nc
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« Reply #9 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 . . .
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Nan
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« Reply #10 on: December 03, 2006, 10:07:41 PM »

I love what you have to offer, yes they are inspiring.....thank you!
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No matter how your heart is grieving....as long as you keep believing, the dream that you wish will come true!
Diagnosed with PKD in 1994
Started HEMO dialysis June 2006
Started Home Dialysis on cycler February 2007
Had Live donor transplant February 2008
okarol
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« Reply #11 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
« Last Edit: January 14, 2007, 01:19:45 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Zach
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"Still crazy after all these years."

« Reply #12 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.
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #13 on: November 19, 2007, 11:59:40 AM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #14 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.
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If you can smile when things go wrong, you have someone in mind to blame.

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Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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willieandwinnie
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« Reply #15 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
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goofynina
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He is the love of my life......

« Reply #16 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;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Adam_W
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Me with Baron von Fresenius

« Reply #17 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
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
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« Reply #18 on: November 21, 2007, 12:22:58 PM »

Now if only there was a way to actually hook them up to the machine!  ::)
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...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #19 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.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
okarol
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« Reply #20 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!  :-\

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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #21 on: December 07, 2007, 11:47:02 AM »

thank you for sharing this.

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Love is a wonderous thing
okarol
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« Reply #22 on: March 03, 2008, 03:08:22 PM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #23 on: July 25, 2008, 09:10:44 AM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #24 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;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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