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Author Topic: What NOT to do or say at the Transplant Evaluation!  (Read 77354 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #50 on: February 24, 2009, 06:28:04 PM »

Do NOT tell them you think anti-rejection meds are over rated.
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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
Aubrey
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I say, you fellows!
« Reply #51 on: April 07, 2009, 02:51:05 AM »
I've never had a problem from Drs about drinking, or smoking cannabis. In hospital in England they give you a questionnaire that asks about recreational drug use - just for treatment (but not to stop treatment - clashing with other drugs etc), but there's never been any frowning or head shaking. Is the US really so condemnatory about stuff like that? As Mark E Smith of The Fall says, everyone knows that Doctors are worse than anyone else when it comes to drinking and drug taking.  :beer1;

On my Pottasium do eat/don't eat list it says no to beer and wine, but yes to Whisky and other spirits. I follow this advice religiously.
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G-Ma
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« Reply #52 on: April 07, 2009, 04:11:00 PM »
ohhhh I would follow that advice toooo.....    :yahoo;
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #53 on: March 02, 2010, 12:19:01 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
Sunny
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Sunny
« Reply #54 on: March 02, 2010, 02:08:43 PM »
Tomorrow I go to see my transplant doctor.
I'll make sure I don't tell him I'm fed up with waiting for his ass to decide when I'm "sick enough" to get my sister's kidney  (she is an 11/11 identical match). I'll have to find a very polite way of saying," What the hell am I waiting for? She offered, she matches, let's just get on with it then! That way she and I can both get on with our lives."
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
-Lady Noir-
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Where's your will to be weird?
« Reply #55 on: March 02, 2010, 02:46:42 PM »
Don't tell them about any of those 'close calls' with alcohol poisoning.
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
kellyt
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« Reply #56 on: March 02, 2010, 06:37:46 PM »
Quote from: Sunny on March 02, 2010, 02:08:43 PM
Tomorrow I go to see my transplant doctor.
I'll make sure I don't tell him I'm fed up with waiting for his ass to decide when I'm "sick enough" to get my sister's kidney  (she is an 11/11 identical match). I'll have to find a very polite way of saying," What the hell am I waiting for? She offered, she matches, let's just get on with it then! That way she and I can both get on with our lives."

11/11 match?  I've never heard of that.   Congratulations!
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
Rerun
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Going through life tied to a chair!
« Reply #57 on: March 02, 2010, 06:58:39 PM »
Probably not a good idea to pull out a gun and say "I am not leaving without a kidney".

                      :blank:
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #58 on: March 02, 2010, 10:31:46 PM »

Do not mention your past life as a call girl/escort.  :shy;
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
Wattle
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« Reply #59 on: March 03, 2010, 04:02:29 AM »


"Will it make me look fat?"   
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
kellyt
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« Reply #60 on: March 03, 2010, 05:56:19 PM »
"I'll be in the bar while waiting for my lab results."   :beer1;
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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
-Lady Noir-
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Where's your will to be weird?
« Reply #61 on: March 04, 2010, 12:49:57 AM »
Quote from: kellyt on March 03, 2010, 05:56:19 PM
"I'll be in the bar while waiting for my lab results."   :beer1;

 :rofl;
Classic!
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #62 on: February 23, 2011, 08:49:44 PM »
 :bump;  ;D
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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« Reply #63 on: February 23, 2011, 09:24:08 PM »
Quote from: kellyt on March 03, 2010, 05:56:19 PM
"I'll be in the bar while waiting for my lab results."   :beer1;

Hmmm, that does seem like something to do  :rofl; :rofl;
There are a few around by the hospital.
 
 
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?
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #64 on: February 24, 2011, 03:34:54 AM »
Don't tell them that your new aged healer/psychic confirmed your vision that no anti rejection drugs were necessary!
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Aubrey
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I say, you fellows!
« Reply #65 on: March 26, 2011, 11:18:39 AM »
Quote from: okarol on March 02, 2010, 10:31:46 PM

Do not mention your past life as a call girl/escort.  :shy;

Seriously, that should not make any  difference, to anything.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #66 on: May 23, 2011, 02:28:54 AM »
 :bump;
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
miket
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« Reply #67 on: May 23, 2011, 08:55:18 AM »
Don't tell them about the celebratory slice of cheese pizza right after surgery.
« Last Edit: May 23, 2011, 08:56:22 AM by miket » Logged
lawphi
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« Reply #68 on: May 26, 2011, 07:15:53 PM »
Who do I make the check out to?
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
Chris
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« Reply #69 on: May 26, 2011, 07:19:52 PM »
Quote from: lawphi on May 26, 2011, 07:15:53 PM
Who do I make the check out to?

Wait that could be a good thing to say  :rofl; :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?
rsudock
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Gender: Female
Posts: 1351


will of the healthy makes up the fate of the sick.
« Reply #70 on: May 27, 2011, 05:17:57 PM »
Will the antirejection drugs interact with my recreational drug use?
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Alisa
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Posts: 50
« Reply #71 on: May 28, 2011, 01:08:58 AM »
Thank you, thank you, thank you all for your sarcasm .  It really hit the spot for me.  Sorry I have nothing funny to add :bow;. After waiting for my transplant for the last 4 years this thread really hit the spot. 
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PD since 2005
Waiting for transplant
vanessa
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Life is so short live it to the fullest!!!
« Reply #72 on: May 29, 2011, 06:28:16 PM »
Really what do i say and what can i expect? i have my appointment on 12th and i am so afraid of them saying no. so what testing do they do i don't use drugs don't drink don't smoke what all do they do? i am told there will be a surgeon a transplant nurse a social worker and a financial ad visor is this true? please let me know what to expect thanks Vanessa
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vanessa!
jbeany
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Cattitude
« Reply #73 on: May 29, 2011, 06:56:02 PM »
vanessa, have you tried the advanced search option?  Click on the Advanced link, use only the word "evaluation" and search only in the Dialysis: Transplant Stories section and you can find dozens of discussions people have posted describing their own evaluations and asking questions about what to expect. 

As for what to expect - a lot information thrown at you in a hurry, a lot of questions about your finances and your family support system, and a lot of time spent waiting around.  Bring a book!
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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.
kitkatz
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« Reply #74 on: June 07, 2011, 01:45:08 PM »
Leave the hooker three inch heels at home.
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Remember your present situation is not your final destination.

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

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