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Author Topic: Paired exchange program  (Read 7584 times)
lola
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I can fly!!!

« on: January 06, 2013, 12:55:58 PM »

1st sorry guys if this is in the wrong section BUT I didn't know where to post, please forgive me :bow; :bow; Ok, soooooo many of you know I am the caregiver to Otto, but for those of you who don't know me I'm Amy aka LOLA. I have many of you as friends on FB but for those of you who have not heard Otto and I FINALLY got to join the paired exchange program, we are listed "internally" as of now and on Friday we will be on the National list :clap; I have MANY diffrent feelings going on about it as Otto has also. I am praying this will bring Otto his kidney as this is our last option, I need to know for my peace of mind I did EVERYTHING possible to find him his hero. The kids are really excited as they have watched there dad go through so much these last few years, never did we think so much could go on in 7 years. YEP 7 YEARS since I started chatting with you in the chat room(ohhhhhhhhh the good old day's) luv ya all :cuddle;
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katieking1981
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« Reply #1 on: January 06, 2013, 06:39:38 PM »

I'm new here and haven't met you, but I hope it works out well for you!!! My boyfriend is waiting to be accepted into a transplant program and I'd love to donate to him. If not I'm happy to be part of a paired exchange. Whatever it takes!
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Married to John (1 liver & 2 kidney transplants) currently on hemo dialysis. Full time working mom to Ayla 13, Carter 5 and Theo 2. Plus our 2 crazy pit bulls.
CebuShan
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« Reply #2 on: January 07, 2013, 10:45:31 AM »

Congratulations! Hope Otto finds his match soon!   :thumbup;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
okarol
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« Reply #3 on: January 07, 2013, 11:38:05 AM »

 :cheer: You're a wonderful wife and I know you went through a lot to get this far.
Here's hoping all goes well and Otto finds a match.
Which paired program are you in?
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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
Poppylicious
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« Reply #4 on: January 07, 2013, 01:24:02 PM »

 :cheer: Keeping everything crossable crossed that this year is YOUR year!

 ;D
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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.
lola
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I can fly!!!

« Reply #5 on: January 30, 2013, 05:27:34 PM »

HOLY CRAP, we have "hit" Otto and I both have blood draws on Monday, my blood will fly to CT his stays here as his donor's blood will fly here!!!!!!! We r in TOTAL shock, and yes we relize something could come up and make it a no go BUT HOLY CRAP!!!!! We have been told nothing other then this looks REALLY good and we will know more in the next week!!!! again HOLY CRAP!!!!!!!
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okarol
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« Reply #6 on: January 30, 2013, 07:46:01 PM »

Wow that's GREAT!!!
One of my friends had a couple chains fall apart so they pretty much figured it would never happen.
But the 3rd time was the charm and they were able to successfully swap.
Will keep good thoughts here!
What program are you in?
 :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
lola
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I can fly!!!

« Reply #7 on: January 31, 2013, 02:52:19 AM »

Karol we r listed with the U and this was from the "national" we don't have a ton of details yet other the the 2 other hospitals have done more "swaps" then the U and everyone is "ready" to go. I'm thinkibg once we know if it's a go they will let us know more.
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MaryJoe
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« Reply #8 on: January 31, 2013, 05:22:12 AM »

This is wonderful news!   :clap;  Praying that Otto's hero has finally been found!   :pray;
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
lola
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I can fly!!!

« Reply #9 on: February 04, 2013, 03:47:32 AM »

well today is the day we all have labs for cross matching tomorrow wish us luck.
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okarol
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« Reply #10 on: February 04, 2013, 01:28:35 PM »

Karol we r listed with the U and this was from the "national" we don't have a ton of details yet other the the 2 other hospitals have done more "swaps" then the U and everyone is "ready" to go. I'm thinkibg once we know if it's a go they will let us know more.

It might be the UNOS pilot program? Hope all goes well!
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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
lola
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I can fly!!!

« Reply #11 on: February 12, 2013, 02:40:23 AM »

Otto did not play nice on the playground, so we continue to wait
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: February 17, 2013, 02:29:40 AM »

I wonder how big the pool is that you are in - National Kidney Registry is largest with over 300 donors.
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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
lola
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I can fly!!!

« Reply #13 on: February 17, 2013, 05:02:07 AM »

not sure, I wish HUGE.....  LOL
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bennyswife
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« Reply #14 on: February 25, 2013, 11:05:17 AM »

I'm not sure what a "paired exchange program" is.  My husband refuses to get on a kidney transplant list or whatever you call it.  He doesn't want a transplant, don't ask me why?  But, i'm assuming that this is great news.  Congratulations and hope everything works out for you. :flower;
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cbatsea
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« Reply #15 on: June 01, 2018, 05:29:37 PM »

I was willling to do a "paired exchange" since I'm not a match for my hubby...but I apparently have fibromuscular displaysia.....had never heard of it, and it affects me NOT AT ALL...but they won't use a kidney from someone with that problem....sign.

A "paired exchange" is where a donor gives a kidney to someone, in return for their loved one getting a kidney from another live donor.
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StarryNight16
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« Reply #16 on: June 06, 2018, 07:06:36 PM »

Just wanted to say good luck! My wife and I had the good fortune to be matched to each other, but we were ready to do the paired donation if that didn't work out. The only hard part has been that BOTH of us are now recovering from surgery at the same time. Be sure to have lots of help lined up for you, your husband, and the kids!
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Simon Dog
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« Reply #17 on: June 07, 2018, 06:00:36 AM »

There are also programs where you can buy your way to the top of the list by having someone donate to the list on your behalf.  You lose the benefit of getting a living donor, however, your donor can recover before redeem your spot at the top of the list.
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KatieV
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« Reply #18 on: June 07, 2018, 07:33:56 AM »

Just wanted to say good luck! My wife and I had the good fortune to be matched to each other, but we were ready to do the paired donation if that didn't work out. The only hard part has been that BOTH of us are now recovering from surgery at the same time. Be sure to have lots of help lined up for you, your husband, and the kids!

How are your mutual recoveries going?  This is one of my big concerns about (if) my husband donates on my behalf.  The added logistics of us both having major surgery, including being out of work for however long is one of the reasons I'm not being aggressive about transplantation at this point. 

May be a moot point, as he has already been disqualified by one transplant program for high calcium.  At an appointment with his GP, I told him to get his PTH checked.  Sure enough - he had an adenoma on one of his parathyroid glands!  It was removed about a month ago and his calcium and PTH levels are back to normal.  Not sure if his history will disqualify him.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
StarryNight16
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« Reply #19 on: June 07, 2018, 02:48:58 PM »

Hi KatieV, our mutual recoveries are going OK. Mine is REALLY good but then again I'm the healthy one (I'm the kidney donor). It's been two weeks and I'm now cleared to drive (yay!). I'm not ready to go back to work full-time; that would probably be three weeks after surgery. Of course, everything varies with your age, your own health, your kind of work, your own particular reaction to surgery, and so on, so I'm not sure if my situation could really apply to your situation.

All I can say is that even with BOTH of us recovering from surgery, the situation now, two weeks post-surgery, is still LIGHT YEARS better than it was before the surgery. You know how bad things can be on dialysis; I don't need to tell you that. Our situation was bad and getting worse, and now it's good and getting better.

Send me a message if you want to talk more.

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