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Author Topic: Got a call but no kidney :-(  (Read 3805 times)
cattlekid
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« on: March 08, 2013, 11:37:00 AM »
So I got "the call" last night at 7:30 PM.  I was just finishing dialysis.  I was informed it was a cardiac death and the brain had not yet ceased functioning.  However, we hightailed it to Madison and after we were there for about an hour, the transplant surgeon informed me that the brain had still not ceased functioning and that the organs would no longer be viable for transplant.  She was very gracious as it was about 12:30 in the morning at this point.  She asked if we wanted anything to eat or to stay overnight in the hospital.  We had already procured a hotel room so we just left, got a bite to eat at a 24 hour diner and then tried to get some sleep and came home today. 

The saving grace of all of this is a) we were told many times that this would happen so we were prepared and b) the surgeon did say that we should expect another call soon.  I am hoping that we may still receive a call in another couple of weeks as my family is here visiting and it would be good timing.
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Speedy1wrc
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« Reply #1 on: March 08, 2013, 11:59:13 AM »
I had the exact same thing happen. I got the call and rushed to the hospital. They weren't as giving with information at first. It was supposed to be a very good match and I was briefed by the coordinator on what to expect. I waited for awhile at the hospital till they told me I could go hme because they weren't "ready". I went home took a quick shower and was on the way back when they called me and told me it was a no go. The had not prepared me for that so I was devastated. It wasn't till much later that they told me that it was too long and the organs also were not viable.

Fortunately I did get one about a year later. Unfortunately swine flu took that away. I am now waiting for another.
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MooseMom
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« Reply #2 on: March 08, 2013, 12:33:53 PM »
I am just really glad that the reason the tx didn't go thru wasn't because they found something "wrong" with you...with your labs or chest x-ray or something like that.

At least now you know you are toward the top of the list.  I know it has been frustrating waiting for so long after being told months ago that they should have a kidney for you sooner rather than later.  I am hoping now it will be "sooner"!
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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."
amanda100wilson
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« Reply #3 on: March 08, 2013, 03:54:21 PM »
sorry to hear this as I know how disappointing that is.
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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...
smcd23
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The patient, the baby and the donor - October 2010

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« Reply #4 on: March 08, 2013, 07:39:34 PM »
If you got the call, that must mean you are near the top or at the top of the list! Yay! Tony was at the top of the list for about 3 weeks before he got "the call" in June. I am going to keep you in my thoughts and keep crossing my fingers that the next call will come soon!!
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
natnnnat
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« Reply #5 on: March 08, 2013, 10:30:21 PM »
Quote from: MooseMom on March 08, 2013, 12:33:53 PM
I am just really glad that the reason the tx didn't go thru wasn't because they found something "wrong" with you...with your labs or chest x-ray or something like that.
Yes I second that thought, and here's hoping that the right kidney for you is on its way at some point.  So much of this kidney business is a waiting game!
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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.
Chris
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« Reply #6 on: March 14, 2013, 10:48:25 PM »
I hope the next call is not a test and that everything will go smoothly.
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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?
Mr. B 123
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« Reply #7 on: March 14, 2013, 11:33:32 PM »
Hang in there! Think positive.
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Honor God, work hard, and keep show'in up.
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cattlekid
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« Reply #8 on: March 15, 2013, 05:55:03 AM »
Thanks everyone!  My mom is here until March 28th and she is convinced that I will get "the call" while she is still here.  We shall see.   :pray;
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bennyswife
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« Reply #9 on: March 15, 2013, 07:55:40 AM »
My prayers are with you that you will get the "call" really quickly especially while your mom is here.  Best of luck to you! :flower;
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sullidog
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« Reply #10 on: March 15, 2013, 06:30:29 PM »
When I got the call I was the backup which I admit I was a bit disappointed hours later the kidney was going to be mine!
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
CebuShan
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« Reply #11 on: March 15, 2013, 06:44:27 PM »
Praying for your kidney to come while your Mom is here!
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HE created marriage and children.
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