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Author Topic: We just got our first call  (Read 3935 times)
rocker
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« on: June 09, 2011, 08:15:47 AM »

They are beginning compatibility testing, and called to ask if he'd been sick and asking him please not to eat.  If there's a match, they hope to have him in surgery "this afternoon."

I didn't have the presence of mind to ask much except age, gender, and cold time.  Cold time would be around 24 hours at the time of surgery.  She wouldn't give age and gender, but said "it's a good kidney".

I'm holding back here, because the last PRA they gave us was 99.  But I am packing a bag.

  - rocker
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tyefly
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This will be me...... Next spring.... I earned it.

« Reply #1 on: June 09, 2011, 08:52:03 AM »

Great News......
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
okarol
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« Reply #2 on: June 09, 2011, 09:14:25 AM »

Wow - here's hoping it's the right match!
 :yahoo;
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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
willowtreewren
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« Reply #3 on: June 09, 2011, 11:40:04 AM »

Fingers, toes, and eyes crossed!

 :bandance;

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. :)
rocker
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« Reply #4 on: June 09, 2011, 12:17:07 PM »

Fingers, toes, and eyes crossed!

Aleta

Oh sure, remind me that I look funny.  ;)

Sitting in pre-op.  No word yet.
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boswife
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us and fam easter 2013

« Reply #5 on: June 09, 2011, 12:23:49 PM »

this is exciting!!  Hoping for a great match and dont keep us waiting ... well be right here wating to hear  :clap; 

 ps,,, your funny rocker
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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
willowtreewren
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« Reply #6 on: June 09, 2011, 12:44:09 PM »

Ha, ha, I thought I was the one who was looking funny.  :clap;

Still hoping to hear the best!  :2thumbsup;

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. :)
rocker
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« Reply #7 on: June 09, 2011, 03:21:39 PM »

Not a match.  We were only called because due to the kidney not being local (it was flown in from another state), they couldn't do the crossmatches before making the calls.  So we were called on strictly a priority basis.

On the bright side, we had no idea he was so high on the list.

Also on the bright side, the surgeon told me the kidney was a match for the backup, and he would be getting the transplant.  So, good news for their family.

Now I think we may follow up on IVIg, knowing that he's near the top now.

A very weird day, but some good out of it.

  - rocker
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Jie
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« Reply #8 on: June 09, 2011, 03:25:38 PM »

I also hope this is due to the top of the list, not due to priority from high PRA.
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MooseMom
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« Reply #9 on: June 09, 2011, 03:27:20 PM »

It does sound like it has been a bittersweet experience for you.  I'm so sorry that this was not your day, but wow...to be so high up the list must give you a huge ray of hope!  So, congrats for that!

I think you both deserve a treat for getting through the day without losing your sanity.  Do something nice for yourselves. :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."
rocker
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« Reply #10 on: June 09, 2011, 03:37:36 PM »

I also hope this is due to the top of the list, not due to priority from high PRA.

Hey, top is top.  I'm not sweating the "why" of it.  :)
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rocker
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« Reply #11 on: June 09, 2011, 03:41:57 PM »

It does sound like it has been a bittersweet experience for you.  I'm so sorry that this was not your day, but wow...to be so high up the list must give you a huge ray of hope!  So, congrats for that!

We keep looking at each other going "How do you feel?"  "I don't know.  How do you feel?"

A little bit of everything, really.  A little disappointment, a little hope, a little bit relieved, a little bit angry...

Quote
I think you both deserve a treat for getting through the day without losing your sanity.  Do something nice for yourselves. :cuddle;

Yeah, we stopped at the grocery and bought some "happy food" on the way home.

:)

  - rocker
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willowtreewren
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« Reply #12 on: June 09, 2011, 05:36:51 PM »

Argh! We were without power for several hours and I just got back on...

Sorry this was not the time for you!  :thumbdown; I can hardly imagine how you are feeling because that day of waiting for the crossmatch test to come back for Carl was somewhat surreal. You certainly deserved some happy food.

At least now you know that the wait might not be too long!  :2thumbsup;

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. :)
carol1987
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« Reply #13 on: June 09, 2011, 05:39:06 PM »

sorry it did not happen  today!!    :cuddle;
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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...)
RichardMEL
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« Reply #14 on: June 09, 2011, 08:29:30 PM »

I was so hoping it would work out for you both!!!

Still, it's good to look on the positive side - that you must be very close to the top (well not you, hubby!) and this means it will hopefully come very soon - the one for him!

Best wishes on this exciting yet deflating day.

 :grouphug; :grouphug; :grouphug; :grouphug;
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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!
boswife
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us and fam easter 2013

« Reply #15 on: June 09, 2011, 08:39:21 PM »

whorl wind day for sure and im glad you survived it ...wish of course that you were reporting *all done and looken great* news, but it's going to happen soon and it's going to be just right.  Still feeling excited for you seeing your up there on the TOP!   Cant wait for the next call  ;D
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #16 on: June 09, 2011, 09:24:05 PM »

 :grouphug; Any call is a good sign, hope you can be encouraged that this was a practice run - and I pray the next time is a go!
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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
rocker
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« Reply #17 on: June 09, 2011, 09:50:25 PM »

Heh.  I think he's learned one lesson from this.

He has a tendency to glance at the caller ID when his phone rings, and not answer it if he "doesn't recognize the number."  About a month ago I finally stored the hospital number in his phone with the hospital name, and told him "Answer all calls coming from the hospital!"

I'll bet he'll be better about answering them now!

Thank you thank you all for all the well wishes.  Our time is coming.

   - rocker
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