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Author Topic: No, I'm NOT a kidney patient...  (Read 14680 times)
GraphicBass
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« on: January 29, 2011, 06:24:06 PM »
I've decided to re-frame how I refer to myself and my kidney failure (and other "issues" as well).

Rather than be a "kidney patient," I've decided that I am a customer of a business that provides healthcare services to consumers with a specific health problem. I am a customer who consumes dialysis services.

Since I adopted that stance, it's amazing how my attitude toward the whole dialysis thing has changed.

  • I feel as if I am now in charge of my treatment again.

  • I can make suggestions to center management, as they receive a great deal of money from my insurance company, which is possible because I pay premiums to the private carrier and Medicare.

  • I can change centers if they don't satisfy my needs. I'm fortunate to live in an area with an abundance of centers within a 30 minute drive.

  • I can manage my own care, keeping an eye on meds, procedures, etc., with the full expectation that any of these must be explained and justified to me at my request as a customer.

Doctors, suppliers, pharmacists, etc. all fall into this same viewpoint.

That's not to say I'm ungrateful about the services I receive (and pay for) or that I am arrogant and don't have respect for the many educated, experienced and kind people working to keep me alive. I am grateful and have great respect for my healthcare team.

But the more I am proud of who I am and the more I carry myself with the confidence of a fully-functional, if slightly worn adult, the more effective their treatment of me will be.

Am I crazy, delusional or in some sort of denial?

Perhaps. But it works for me.

Just sayin'

gary
« Last Edit: January 29, 2011, 06:57:58 PM by GraphicBass » Logged
Lillupie
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wedding 12-10-11

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« Reply #1 on: January 29, 2011, 06:28:10 PM »
NO I love your attitude!!! :boxing; I think that is a great attitude to get you through this.  :cheer: Whoo hoo.

Lisa
When I get my book up and going again, maybe you can add that. oNe of my questions is "how do you cope with this?"
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
boswife
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us and fam easter 2013
« Reply #2 on: January 29, 2011, 07:36:23 PM »
i love it........ and if i wernt so dogonne tired tonight, i'd have a better response ..  but i really love wha tyou have said.
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
jbeany
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Cattitude
« Reply #3 on: January 30, 2011, 09:32:16 AM »
Here's Bill's idea - Dialyzor -

http://ihatedialysis.com/forum/index.php?topic=2276.msg31681#msg31681
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Zach
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"Still crazy after all these years."
« Reply #4 on: January 30, 2011, 10:27:13 AM »

Person on dialysis.
--or for short, POD.

 8)
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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."
Bill Peckham
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« Reply #5 on: January 30, 2011, 02:47:40 PM »
Quote from: Zach on January 30, 2011, 10:27:13 AM

Person on dialysis.
--or for short, POD.

 8)


Person Using Dialysis


I'm on drugs, I use dialysis.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Zach
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"Still crazy after all these years."
« Reply #6 on: January 30, 2011, 03:56:22 PM »
Person Living With Dialysis
PLWD

8)
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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."
Lillupie
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wedding 12-10-11

WWW
« Reply #7 on: January 30, 2011, 05:56:23 PM »
Quote from: Zach on January 30, 2011, 10:27:13 AM

Person on dialysis.
--or for short, POD.

 8)

HEY HEY EVERYONE> THAT IS AN IDEA FOR A T-SHIRT!!!
Logged
Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
greg10
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« Reply #8 on: January 30, 2011, 08:54:14 PM »
Quote from: Zach on January 30, 2011, 10:27:13 AM

Person on dialysis.
--or for short, POD.

 8)
POD is right, except it stands for Person Overcoming Dialysis.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
Gandalf
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"Character is Destiny" Heraclitus
« Reply #9 on: January 30, 2011, 09:23:27 PM »
Absolutely superb - thank you for that perspective. WOW
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kristina
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« Reply #10 on: January 31, 2011, 02:45:51 AM »

Great attitude, GraphicBass, I am sure it will serve you well in the future!

Because of my severe pre-dialysis vegetarian diet-restrictions I have convinced myself of:

My food is my fuel and nothing else.

(That attitude prevents me from getting depressed about my downtrodden boring diet...)

Good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
GraphicBass
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« Reply #11 on: January 31, 2011, 05:39:07 AM »
Cool replies and ideas for alternate names. "POD" either way, I like it!

kristina, I tried to look at "food as fuel" but was unable to sustain that attitude. I like food too much. More power to you. I know a great many vegetarians/vegans/raw food enthusists, and they've tried to help with tasty (to them) recipes, but I'm afraid I'm a carnivore at heart.

My wife and I (she researching and cooking, and me tasting!) fortunately have come up with a diet that suits us both, and that our renal dietician has said to be excellent and well-regimented. So I guess we're doing something right... heh.

g
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texasstyle
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« Reply #12 on: February 02, 2011, 03:37:03 PM »
Love it! I have to tell my husband to start thinking like that. He is getting mighty depressed. Even though you go to  a center you are still in charge of your life. Make it the best it can be!
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caregiver to husband using in-center dialysis 4 years
kitkatz
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« Reply #13 on: February 06, 2011, 07:03:13 PM »
POD Person!  :rofl;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Ladystardust24
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Keep Calm, Carry on.
« Reply #14 on: January 11, 2012, 03:33:23 PM »
This is a awesome way to look at it.  :2thumbsup;
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Dialysis 99-01
transplanted 01-04
Dialysis 04-10
Currently Transplant 10-22 +!

Very grateful for my Ziggy Bean.
fearless
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« Reply #15 on: January 11, 2012, 05:59:47 PM »
EXCELLENT EXCELLENT EXCELLENT!!!

I am going to follow your example.
One thing that switching to hemo is teaching me: is to conduct myself as an equal to those who are caring for me.  i've always had a tendency to be rather fawning to try to get what I want/need.  This is an important lesson for me to learn: how to ask for and accept help in a confident adult fashion, and how to assert myself when my needs butt against established policies.  Adopting your attitude will help me very much.  Thanks!
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VintageVera
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« Reply #16 on: January 16, 2012, 02:06:19 AM »
Told my dialysis nurse that calling me a "patient" was the same as my calling her an "employee.'' Should have seen the look on her face -- she got it!
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GraphicBass
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« Reply #17 on: January 26, 2012, 01:02:50 PM »
Quote from: VintageVera on January 16, 2012, 02:06:19 AM
Told my dialysis nurse that calling me a "patient" was the same as my calling her an "employee.'' Should have seen the look on her face -- she got it!

Wish I'd thought of that!   :)
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VintageVera
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« Reply #18 on: February 02, 2014, 03:39:05 PM »
I AM NOT A PATIENT, I'M A PERSON.
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amanda100wilson
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« Reply #19 on: February 03, 2014, 05:30:06 AM »
The use of the word patient does not bother me at all.    I am who I am.  I am not defined by a word.  I like the suggestions though.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Dman73
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« Reply #20 on: February 03, 2014, 06:59:29 AM »
I don't go to dialysis...I go to the spa.
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hd 73
tx  87
hd 01

by the yard life is hard by the inch it's a cinch...
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