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Author Topic: What NOT to do or say at the Transplant Evaluation!  (Read 77356 times)
kitkatz
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« Reply #25 on: December 01, 2006, 08:54:16 PM »
I would not ask everyone in the waiting room what blood type they were either.
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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
Rerun
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« Reply #26 on: December 05, 2006, 04:40:51 PM »
I'm going to the Transplant "Support" Group tonight!  The topic is "The Pre-Renal Evaluation Process".  The speaker is the biotch that told me it wasn't fiesable to work me up for a transplant because I would be moving........ 

How does Kitkats put it?  MULllllllllhhahahahah   >:D
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jbeany
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Cattitude
« Reply #27 on: December 05, 2006, 06:31:09 PM »
*express mailing crate of rotten tomatoes to rerun*

 >:D
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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.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #28 on: November 22, 2007, 01:25:21 PM »
Do NOT say, "I have cash, in small unmarked bills. Who do I pay??"

 ::)
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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
kitkatz
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« Reply #29 on: November 22, 2007, 08:52:02 PM »
Do not bring a small unmarked kid with you and mark his right kidney for the taking.
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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
Katonsdad
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« Reply #30 on: November 23, 2007, 03:48:34 PM »
 
                Do not say , I will be taking a bus to the Hospital when they call me ....

                Or I will be flying Jet Blue to the hospital .

                Or , I don't have a phone for them to call me ,. but my PO Box number is ....

      Katonsdad
Logged
Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #31 on: August 04, 2008, 11:07:05 PM »


Do not mention two words: medicinal marijuana  :secret;
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
G-Ma
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« Reply #32 on: August 05, 2008, 05:31:07 AM »
Probably wouldn't be good to mention my keg of margaritas and the hose???
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
peleroja
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I have 16 hats, all the same style!
« Reply #33 on: August 05, 2008, 07:13:48 AM »
Quote from: Epoman on June 22, 2006, 10:47:47 PM

Do not say "Sucks to be those Kaiser patients in the news recently, huh?"


Uh oh, I'm a Kaiser patient and I never heard anything about Kaiser patients having transplant troubles.  Please 'splain cuz I just got approved to go to the UCLA transplant center.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #34 on: August 05, 2008, 08:58:51 AM »
Quote from: peleroja on August 05, 2008, 07:13:48 AM
Quote from: Epoman on June 22, 2006, 10:47:47 PM

Do not say "Sucks to be those Kaiser patients in the news recently, huh?"


Uh oh, I'm a Kaiser patient and I never heard anything about Kaiser patients having transplant troubles.  Please 'splain cuz I just got approved to go to the UCLA transplant center.

It was in the news last year, here's one link, http://ihatedialysis.com/forum/index.php?topic=3449.0 but there is more in the news section. UCLA is not affected, but I personally suggest also listing outside of Los Angeles (San Diego area has a shorter wait time) as a multiple listed patient.
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
kellyt
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« Reply #35 on: August 05, 2008, 10:25:50 AM »
Do not tell them that your imaginary friend has offered to be tested!     I love my imaginary friend.   :cuddle;
Logged
1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kitkatz
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« Reply #36 on: August 05, 2008, 04:16:38 PM »
Yeah, to the above.  Also make sure they know you have a support system in place and it is NOT the imaginary friend.
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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
Chris
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« Reply #37 on: August 05, 2008, 05:47:08 PM »
I've got nothing funny to say! :( :urcrazy;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Katonsdad
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« Reply #38 on: August 06, 2008, 03:03:29 PM »
Do not tell them that you make a practice of running in traffic and you like to bungeee jump off
small bridges and you like to be the first one to ride a carnival ride before its inspected and
do not tell them you dream of the day you can eat steak tatar and real cesar salad . Do not
tell them you like to pick bar fights at biker bars and definetly do not tell them you love to sing
Barry Manilow songs at Kareoke night. 

"at the copa the copa cabana  :bandance;

Katonsdad
Logged
Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
Rerun
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Going through life tied to a chair!
« Reply #39 on: August 06, 2008, 09:45:06 PM »
Do not say "I don't want another p*cking kidney".  Are you crazy?  Why would I want to go through losing it again!  All the damn drugs and such.  Hellll no I don't want one. 

(That is how I feel, but I still want on the List)    :waving;
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KT0930
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« Reply #40 on: August 07, 2008, 10:09:41 AM »
Do not tell them that your dream career is to be an infectious diseases doc
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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.
kellyt
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« Reply #41 on: August 07, 2008, 03:13:55 PM »
Do not tell them you can't wait to get your new kidney so that you can move forward with your dream of being a World Champion Kick Boxer!!   :boxing;
Logged
1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kitkatz
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Posts: 17042
« Reply #42 on: August 07, 2008, 05:05:11 PM »
Do not tell them your dream of being the World Wrestling Federation Champion of cage wrestling!
Logged


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
Chris
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Posts: 9219


WWW
« Reply #43 on: August 07, 2008, 07:05:59 PM »
Don't tell them you like to go to a beer drinking championship in Germany and participate heavily like in Beerfest :rofl;
Logged
Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
G-Ma
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Gender: Female
Posts: 2191
« Reply #44 on: August 07, 2008, 07:44:35 PM »
guess I shouldn't tell them I go to the mountains for my "recipie".......NxS trainer today said many patients in GA got kidney failure from the lead in the "recipie" they used.  :puke;
Logged
Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
kitkatz
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Gender: Female
Posts: 17042
« Reply #45 on: August 10, 2008, 11:19:56 AM »
I would not tell the coordinator you plan on skydiving regularly after your transplant.
Logged


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
kellyt
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Posts: 3840
« Reply #46 on: August 10, 2008, 12:50:35 PM »
Do not tell them if you have a pending lawsuit against your last surgeon.
Logged
1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Chris
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Gender: Male
Posts: 9219


WWW
« Reply #47 on: August 10, 2008, 03:49:37 PM »
Quote from: kellyt on August 10, 2008, 12:50:35 PM
Do not tell them if you have a pending lawsuit against your last surgeon.
:rofl; :rofl; :rofl; :clap;

Do not tell them .......................I got nothing! :banghead; :banghead;
Logged
Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #48 on: August 10, 2008, 05:43:49 PM »


Do NOT tell them you take herbal cures instaed of conventional medications.
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
Chris
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******
Offline Offline

Gender: Male
Posts: 9219


WWW
« Reply #49 on: August 10, 2008, 06:14:14 PM »
Do not tell them that they have to schedule your transplant around your busy schedule.
Logged
Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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