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Author Topic: It's a long shot.... But  (Read 5681 times)
amanda100wilson
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« on: June 17, 2015, 07:24:22 AM »
It's a long shot, but John Hopkins may have a kidney for me.  Just playing the waiting game.
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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...
MooseMom
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« Reply #1 on: June 17, 2015, 07:33:52 AM »
Oh my!  How exciting!  :yahoo;  I hope that long shot is yours after all.   :bow;
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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."
iolaire
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« Reply #2 on: June 17, 2015, 07:34:32 AM »
Good luck, take some time to mediate or do something similar to relax yourself, that stress well waiting is not healthy...

Also wondering how long you have been listed there?  They claim they have shorter waiting times than the centers in the DC area.  At times I think about listing but then I don't really want to spend the time commuting from N VA to Baltimore when the time comes.  That would make it hard for my wife to visit after work, etc...
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Deanne
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« Reply #3 on: June 17, 2015, 08:01:57 AM »
cautiously  :bandance;

I hope I see you disappear soon since it'll mean you're headed to the hospital!
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Vt Big Rig
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« Reply #4 on: June 17, 2015, 10:53:16 AM »
Praying for you.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kristina
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« Reply #5 on: June 17, 2015, 02:46:43 PM »
Hello Amanda,
I keep my fingers crossed for you and I do hope you won't have to wait too long !   :flower;
Good luck wishes 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 ...
amanda100wilson
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« Reply #6 on: June 17, 2015, 03:49:57 PM »
Still waiting to hear either way.  I transferred my time so have been waiting for twelve years because of high antibody level.  Bear in mind allocation criteria has recently changed.  My age goes against me, but my antibody level trumps that and shoots me to the top of the list after they have skimmed off the best 20% for younger patients. 
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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...
Charlie B53
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« Reply #7 on: June 17, 2015, 08:16:20 PM »

I can only try to imagine the anticipation waiting to get another call.

I see from the timestamps on the postings that has been most of the day already.  That along makes me think that it went to someone else.

I would hope they would at least call to let you know, either way so to end your anticipation.

Or you could be in surgery  already.

I'm hoping you are and we won't see a posting from you for a couple of days, then an announcement of a successful procedure!

Take Care,

Charlie B
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amanda100wilson
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« Reply #8 on: June 18, 2015, 08:29:06 AM »
Preliminary biopsy looks ok, and I am first in line for the kidney
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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...
Deanne
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« Reply #9 on: June 18, 2015, 09:16:48 AM »
OMG OMG OMG!!!!!


Are you pacing? I think I would be pacing with the phone in my hand.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #10 on: June 18, 2015, 10:53:54 AM »
WWWWWWWWWWWWWWWWWWWOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOWWWWWWWWWWWWWWWWWWWWW!  I hope we get to hear more good news from you soon!!
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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 #11 on: June 18, 2015, 02:09:35 PM »
 It is not sounding as if the transplant will happen because there are some issues with the kidney.  However, the coordinator did tell me that the new allocation system is favorable to those with a high PRA.  That seems to be borne out by some recent transplants that I have read about, where people have been on dialysis for a long time and/or have a high PRA.  Hoping that if this is not the right one, that another will come along sooner than the twelve years that I have been waiting for this call.
Logged
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...
Deanne
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Posts: 1841
« Reply #12 on: June 18, 2015, 02:45:28 PM »
I want to cry. What a let-down. Are you doing ok?
« Last Edit: June 18, 2015, 03:01:52 PM by Deanne » Logged
Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
amanda100wilson
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« Reply #13 on: June 18, 2015, 02:55:19 PM »
I am, but very disappointed.  There is a slim chance that the surgeon may look at it, and find that it is ok, but it has two arteries which are small, and the donor was in his sixties so there is a chance that this is compounded by narrowing, then my high PRA is likely to give a higher likelihood of clotting.  I have been through a roller coaster of emotions today.  It is not something I want to repeat too many times.
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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...
MooseMom
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Posts: 11325
« Reply #14 on: June 18, 2015, 02:59:16 PM »
I am sorry to hear this but hope there is still a possibility that things might work out after all.

I'm sure it has been hard for you today.  I know it's not something you want to go through time after time, but on the other hand, I do so want you to get a GOOD kidney and not be fobbed off with a dicey one.

 :cuddle;
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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."
cassandra
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When all else fails run in circles, shout loudly
« Reply #15 on: June 18, 2015, 03:12:55 PM »
I'm really sorryAmanda

       :grouphug;


Lots of love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Vt Big Rig
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« Reply #16 on: June 19, 2015, 04:49:05 AM »
Amanda, I can only imagine how that day went after waiting so long. There is a song sung by Garth Brooks  ...... "Sometime God's greatest gifts are unanswered prayers".  I have to believe He has greater plans for you and this was not the right match for you.

Best of Luck and God Bless!
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
SooMK
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Posts: 610
« Reply #17 on: June 19, 2015, 05:34:03 AM »
I hope you get another call soon. Seems there's no other way to do it but to have everyone ready to go pending verification of the health of the kidney but it must take a lot out of the recipient. Thinking of you.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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