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Author Topic: Called! Waiting, waiting....  (Read 17006 times)
Deanne
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« on: February 09, 2014, 12:13:19 PM »

I got the call!  :cheer:

Now I'm home sending out of office email messages, checking in my files, charging my electronic toys, arranging for cat/dog sitting, and pacing. I won't know anything else for a while. My coordinator is iced in at home, too. We're in the middle of an ice/snow storm and the hospital is about 1/2 hour away when the roads are good so it could take a couple hours to get there. I'm hoping it starts to thaw before they call me in. She said it could be later today, tonight, or tomorrow morning, but given the road conditions, she's trying very hard to not put me on the road after dark.
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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
Poppylicious
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« Reply #1 on: February 09, 2014, 12:29:17 PM »

EXCITING!!

 :yahoo;
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: February 09, 2014, 12:48:30 PM »

Wow!!! Here's hoping!!!

 :bow;



Good luck,and 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
lainiepop
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« Reply #3 on: February 09, 2014, 01:30:59 PM »

Good luck!!!!xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
okarol
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« Reply #4 on: February 09, 2014, 01:34:05 PM »

Oh that's great to hear!! I will keep fingers and toes crossed that you can get there safely and all moves forward.
 :2thumbsup; Good luck to you Deanne.
Prayers for the family who is losing a loved one today.  :pray;
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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
MooseMom
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« Reply #5 on: February 09, 2014, 01:49:31 PM »

Oh, I can hardly breathe from the excitement, Deanne!  I am hoping my hopiest for you and am eagerly awaiting more news from you. 

Prayers to you and to the donor family.  It's all bittersweet, isn't it.   :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."
Darthvadar
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« Reply #6 on: February 09, 2014, 01:51:13 PM »

Fingers crossed for you!....

Thoughts and prayers for the donor family....

Hope everything goes well....

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
willowtreewren
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« Reply #7 on: February 09, 2014, 02:25:22 PM »

Whoop! Whoop!

Carl's kidney had to come from the northeast during a horrible snow storm three years ago. It made it to Knoxville and has had a new home since then.

I'm rooting for you!

Aleta

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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Ninanna
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« Reply #8 on: February 09, 2014, 03:56:44 PM »

Yay good luck and keep us posted!! :yahoo;
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Joe
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« Reply #9 on: February 09, 2014, 06:22:15 PM »

Best of luck Deanne!
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Angiepkd
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« Reply #10 on: February 09, 2014, 07:26:27 PM »

How exciting! I can only imagine the waiting!  Hang in there and hope the weather clears for you.  Prayers for both you and the donor family!   :beer1;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Deanne
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« Reply #11 on: February 09, 2014, 07:57:05 PM »

Thanks ya'll! I don't think this one will be mine. My coordinator called back to tell me they're going to try to take the pancreas, too, and I was second in line for a kidney. The person first in line will get one kidney and the second kidney will go with the pancreas if the pancreas is usable. If the pancreas is not usable, then the kidney is mine. I'm surprised I'm not very disappointed or even surprised. I guess I've seen it happen so many times here, that I was emotionally prepared for a false alarm. I'll learn the final answer sometime tomorrow. In the meantime, it was a good reminder to make sure I have everything ready, and I'm glad I probably don't need to figure out how to get to the hospital on dicey roads. If I was second in line for a kidney this time, it means I'll probably be first in line the next time.
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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
okarol
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« Reply #12 on: February 09, 2014, 08:29:04 PM »

Thanks for the update - will keep good thoughts. I like your attitude, when it's meant to be it will happen!  :cheer:
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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
RichardMEL
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« Reply #13 on: February 09, 2014, 11:34:42 PM »

Thanks for the update....

I guess/hope it's a good outcome either way - even if you don't get this kidney, some person who needs that K/P tx with diabetes will hopefully benefit.. and that is a plus...

and you got called... that's got to boost your morale a little.... (specially in reference to that "top of the list"thread).

fingers crossed. I hate to say I hope the pancreas isn't useable and you get the kidney because that seems horrible and nasty for someone else, but still hoping for you!
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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!
cariad
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« Reply #14 on: February 10, 2014, 01:35:39 AM »

You've got a fab attitude, Deanne. It would seem that your new kidney will not be long in coming now. If this is just a dress rehearsal, you'll be all the calmer and more prepared when the real show begins. (And hopefully no ice on the roads.) Good luck!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Darthvadar
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« Reply #15 on: February 10, 2014, 09:30:14 AM »

As Deanne's not been back to update us, is it too much to hope for that she's otherwise occupied being transplanted!....  :pray;

Thinking of you, Deanne....

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
willowtreewren
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My two beautifull granddaughters

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« Reply #16 on: February 10, 2014, 10:42:30 AM »

As Deanne's not been back to update us, is it too much to hope for that she's otherwise occupied being transplanted!....  :pray;

Thinking of you, Deanne....

Darth....

My thoughts exactly!  :2thumbsup;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Deanne
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« Reply #17 on: February 10, 2014, 11:00:35 AM »

It's mine! I checked in at 8 this morning. Surgery will likely be tonight. The donor is CMV-. I thought CMV- was too much to hope for. BP is way too high. Hoping it drops soon.
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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
Darthvadar
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« Reply #18 on: February 10, 2014, 11:42:13 AM »

YIPPIE!!!!!!!!!......

 :yahoo; :yahoo; :yahoo;

Great news, Deanne....

I'll be thinking of, and praying for you, and of course, the donor's family....

Best of luck, and may God bless and protect you!....

Love from us all....

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
paris
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« Reply #19 on: February 10, 2014, 11:54:53 AM »

I am so excited for you.  You have been waiting a long time.  Your new life begins soon.  I'll be saying lots of prayers for you, for the donors family and for the doctors.  It still amazes me every time someone gets a kidney. Isn't it truly a miracle?   What an exciting day.   Sending lots of love.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
MooseMom
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« Reply #20 on: February 10, 2014, 12:12:46 PM »

Yyyyyyyyyyyyyyyyyyyyyyyyyyyyyaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy!

OMG, I just can't believe it!!!  Well, yes I can, but you know what I mean.  ;D

I'm not sure I'll be able to concentrate on anything else for the rest of the day.  I'll be thinking about you all evening long.  I am just thrilled to pieces, and I'm hoping that by this time tomorrow, dialysis will just be a memory.

Deanne, I am very happy for you.  Please keep us posted as best you can.  God bless.
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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."
monrein
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Might as well smile

« Reply #21 on: February 10, 2014, 02:48:12 PM »

Thinking of you Deanne and waiting for news.   :flower;
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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
Ninanna
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« Reply #22 on: February 10, 2014, 06:03:11 PM »

That's fantastic news!  Wishing you a speedy recovery! :cheer:
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
okarol
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« Reply #23 on: February 10, 2014, 07:30:54 PM »

This is great!  :bandance;
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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
RichardMEL
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« Reply #24 on: February 10, 2014, 07:44:36 PM »

best wishes!!!! WOOO!!!!
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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!
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