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Author Topic: Transplant didn't happen. Sadness!  (Read 5364 times)
hotnspicyazgirl
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« on: November 18, 2010, 10:57:51 PM »

I just wanted to update you all. I did not end up having the transplant today. Apparently I was a backup, and because Mayo "owed" a kidney to another hospital out of state...it went to that person.
I am remarkably ok with this news. I am disappointed, but believe that the Lord above knows what He is doing, and has a plan for me. I might be in shock, but I think I am ok.

Thank you for all of the love, and well wishes. Okarol, thank you for the personal message.

Much love,
Deanna
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YLGuy
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« Reply #1 on: November 18, 2010, 11:20:14 PM »

 :grouphug;
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Des
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« Reply #2 on: November 18, 2010, 11:27:47 PM »

 :grouphug; :cuddle;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
okarol
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« Reply #3 on: November 18, 2010, 11:35:51 PM »

Bad luck Deanna, I am sorry it did not work out. The good news is you were called, and that means you're on the radar for future calls. I hope you miracle comes soon.  :cuddle;
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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
Riki
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« Reply #4 on: November 19, 2010, 12:08:51 AM »

I don't understand.. why would they bother calling if they were going to give the kidney to someone else?  I'd probably be homicidal if someone did that to me
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
okarol
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« Reply #5 on: November 19, 2010, 12:36:52 AM »

When they do the tissue match they notify the best match at the local area, but sometimes the kidney is sent elsewhere. I have never heard of a center calling potential recipients without planning to transplant locally but it doesn't surprise me. Another friend was called in California that she had a matching kidney that was being sent from Maine. After getting her in to the hospital, taking more blood, confirming the match, she ended up not getting it because they couldn't get a commercial flight arranged. Crazy huh?
For each kidney they call 4 to 7 people. They are all matching, but the 1st person is the one with the most wait time. But sometimes, due to illness or logistics, the 1st person, or 2nd or 3rd back up, might not be the recipient. There's a specific window of time for the organ to be used so everyone has to be ready, even if they are 6th back up.
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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
Jean
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« Reply #6 on: November 19, 2010, 01:14:47 AM »

Oh, so sorry to hear the bad news. But, you are right, God has a different plan for you. Yours will come. Stay strong.   :cuddle;
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One day at a time, thats all I can do.
RichardMEL
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« Reply #7 on: November 19, 2010, 02:14:12 AM »

sorry to read!! I was so excited when I read the post saying you'd get it - thats what I get for catching up with older threads first!!

Still, that you got the call is a very good sign that you're close to the one for you!! I hope it is soon!!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
galvo
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« Reply #8 on: November 19, 2010, 03:33:42 AM »

Sorry to hear this. I hope the next call is just around the corner.
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Galvo
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Might as well smile

« Reply #9 on: November 19, 2010, 03:38:06 AM »

hoping you won't wait too long for the next call.
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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
natnnnat
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« Reply #10 on: November 19, 2010, 06:39:03 AM »

That could have done your head right in.  Good on you for your tranquility.   :cuddle;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
carol1987
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« Reply #11 on: November 19, 2010, 06:53:37 AM »

 :cuddle; so sorry.... but  I believe that you are right....about Gods plan... the right kidney for you will come!!!
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
MooseMom
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« Reply #12 on: November 19, 2010, 09:27:43 AM »

What a shock!  Oh my, I am so sorry that this time it didn't happen for you, but another call could call tomorrow.  I'm wishing you all the very best. :cuddle;
 Go out and have a fun weekend and try to forget all about this stupid kidney stuff for a while.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
lola
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I can fly!!!

« Reply #13 on: November 19, 2010, 09:33:41 AM »

 :grouphug; :grouphug;
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kellyt
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« Reply #14 on: November 19, 2010, 12:00:57 PM »

Disappointing news for sure, but like Karol said you are now on "the radar" for future calls.  Now you have time to prepare a little.  Get things ready around your house, at your work, etc. and keep your hospital bag packed!  That wasn't your kidney.  But your kidney is coming.   :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
Desert Dancer
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« Reply #15 on: November 19, 2010, 12:42:45 PM »

Sorry to hear this, Deanna; it must be incredibly disappointing.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
boswife
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us and fam easter 2013

« Reply #16 on: November 19, 2010, 01:35:23 PM »

Im sorry  :(  But like others have said, at least you KNOW your being noticed and on 'their' schedule, so hopfully in your right time, (or *His*  ;) ) your kidney will happen..  keep the faith  :pray;
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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
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« Reply #17 on: November 19, 2010, 01:44:02 PM »

Sorry to hear this. It will happen soon.
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renalpenguin
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« Reply #18 on: November 19, 2010, 03:16:16 PM »

 :grouphug; 

Praying for you.
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August 2007- Diagnosed with nephrotic syndrome
September 2007- Kidney Biopsy found FSGS
December 15, 2009- Transplant Evaluation
January 7, 2010- I'm on the list!
February 4, 2010- Fistula and PD Catheter Surgery
March 8, 2010- Begin CCPD; My cousin will be my donor in June!
June 22, 2010- I got a kidney from my awesome cousin!
"Trust in the Lord with all your heart. Lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
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« Reply #19 on: November 20, 2010, 02:15:41 PM »

I still don't understand.. I was only ever called once.. and I actually got the kidney that time.

For anyone in the province that I live in, it's at least a 4 hour drive to the hospital where the transplant will happen, because we have to go out of province.  If we drove all the way there, and the transplant didn't happen, they'd better be paying our gas.

I was there almost a full day before the kidney was.  The security guard told my mom that it arrived by taxi a few hours before the surgery
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Sax-O-Trix
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« Reply #20 on: November 21, 2010, 04:53:18 AM »

Hopefully the next one will be yours! 

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Preemptive transplant recipient, living donor (brother)- March 2011
okarol
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« Reply #21 on: November 21, 2010, 10:31:36 AM »

I still don't understand.. I was only ever called once.. and I actually got the kidney that time.

For anyone in the province that I live in, it's at least a 4 hour drive to the hospital where the transplant will happen, because we have to go out of province.  If we drove all the way there, and the transplant didn't happen, they'd better be paying our gas.

I was there almost a full day before the kidney was.  The security guard told my mom that it arrived by taxi a few hours before the surgery

Because you are not close to the hospital it's possible that you were never called as a back up because your team knew it would be a hardship. Or you just never had a tissue match prior to the call you did get.
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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
Riki
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« Reply #22 on: November 21, 2010, 02:01:05 PM »

I still don't understand.. I was only ever called once.. and I actually got the kidney that time.

For anyone in the province that I live in, it's at least a 4 hour drive to the hospital where the transplant will happen, because we have to go out of province.  If we drove all the way there, and the transplant didn't happen, they'd better be paying our gas.

I was there almost a full day before the kidney was.  The security guard told my mom that it arrived by taxi a few hours before the surgery

Because you are not close to the hospital it's possible that you were never called as a back up because your team knew it would be a hardship. Or you just never had a tissue match prior to the call you did get.

If that's the case, then no one from my province would ever be called as a backup, as we all have to go to the same out of province hospital for transplant
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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