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Author Topic: May become part of Transplant Chain!!! UPDATE...  (Read 3410 times)
carol1987
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« on: November 03, 2010, 09:24:01 AM »

My DH was cleared to donate on 10/25 and we went up on the paired exchange list yesterday morning. 
Our co-ordinator got a call with a potential match at 6 PM !!!!!!

We went this morning to give blood and will see if this works out!

The only thing I know is that there are 8 pairs in the chain already and we may get to be added in.... everyone else is cleared and ready to go... so if this happens it will be soon....

Keep good thoughts for us!!   :pray;

UPDATE:  Apparently  the person who matched me decided not to donate.... so part of the chain fell apart.  I am happy to say that a good  portion stayed together so there will be success for others. 
A new chain is being formed and they are checking out a new match for me.... my co-ordinator is quite confident that I will get a kidney... perhaps not this time  but it should happen!
My poor DH partner who will donate on my behalf now has to give more blood... my sample is always held but everytime there is a potential match he will have to have blood drawn.   He's a sweetie!!
« Last Edit: November 08, 2010, 11:21:53 AM by carol1987 » Logged

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...)
okarol
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« Reply #1 on: November 03, 2010, 09:28:30 AM »

Great! Which paired donation group are you with?
I hope all goes well!  :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
Marina
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God Bless my donor family!! :)

« Reply #2 on: November 03, 2010, 09:31:12 AM »

 :bandance;   I  pray  this  works  out !!!         can you  believe  how  many  people will benifit  from this?   Paired  donation  is  such a  great  thing.

I  will keep  your  hubby   and the  rest  of the  chain  in my thoughts  and   :pray;

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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
carol1987
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« Reply #3 on: November 03, 2010, 09:44:45 AM »

Thanks Marina!

Okarol... I don't even know... it is being co-ordinated through Hackensack University Medical Center.. where I am also listed on the UNOS Transplant list.  I think you posted and article on a chain they were involved with last year.. where an baby got a kidney from California . 


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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...)
okarol
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« Reply #4 on: November 03, 2010, 09:57:17 AM »

Looks like it's the National Kidney Registry. I wonder how the baby is doing now?
http://www.northjersey.com/news/health/021210_Toddler_gets_kidney_her_dad_gives_his_to_LA_man.html
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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
carol1987
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« Reply #5 on: November 03, 2010, 10:11:43 AM »

I have not heard anything about the baby ....  so no news is hopefully good news!     I will ask my co-ordinator at some point  , and let you know!!
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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...)
Tracy
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Loved the Movie!

« Reply #6 on: November 03, 2010, 01:03:54 PM »

Wow!!  Great news!  Good Luck to you and yours!!  And Everyone else!!  :bandance; :cheer: :clap; :yahoo;
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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
carol1987
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« Reply #7 on: November 03, 2010, 01:48:20 PM »

Thanks Tracy!! 
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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...)
paris
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« Reply #8 on: November 03, 2010, 02:44:07 PM »

This is wonderful.   :2thumbsup;    Get your things to take to the hospital in order and clean the refrigerator!   :rofl;   You will want everything sparking and disenfected when you come home.   I am excited for you and can't wait to hear how soon this will happen.   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
carol1987
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« Reply #9 on: November 03, 2010, 02:46:54 PM »

Thank you Paris!!!  i am making a huge to do list!!!!  Even it this does not go through this time... the fact that we got matched so fast means that it is possible!!!!
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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...)
Riki
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« Reply #10 on: November 03, 2010, 03:43:06 PM »

I'd love to get in on the Paired Donor Exchange Program, which goes across Canada, but Nova Scotia, where my transplant centre is, has yet to ratify the program, citing privacy concerns for patients.  It's possible that they have either ok'd it or denied it, but my neph looked at me like I had 2 head the last time I asked him about it.  He'd never heard of it before.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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HD - Dec 2008-present
carol1987
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« Reply #11 on: November 03, 2010, 03:55:37 PM »

Hi Riki! 
How can privacy be a concern when you have to request to get into the paired exchange... its not  like they just take your records without you giving permission !!

Well I promise you that if DH and I are successful in this program we will  be available to help you lobby whomever you need to to get the program in Nova scotia!!!   :thumbup;

Okarol may know for sure  but I think the paired exchange program is relatively new.... 2008 maybe???


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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 #12 on: November 03, 2010, 04:09:23 PM »

wow eight pairs - that's amazing!! Best wishes this comes off - if not for you than for those other folks involved!! The more the merrier!!!  :rofl;

 :2thumbsup; :2thumbsup; :2thumbsup; :clap; :clap; :clap; :clap;
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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!
okarol
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« Reply #13 on: November 03, 2010, 04:11:11 PM »

Yes, National Kidney Registry started in 2008. The Alliance for Paired Donation and the Paired Donation Network have been in place longer but with much less US coverage and success.

Riki: Here's a recent news story, might be encouraging: http://ihatedialysis.com/forum/index.php?topic=20765.0
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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
Riki
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« Reply #14 on: November 03, 2010, 04:24:15 PM »

I don't know. It's nice that they are trying to educate health providers. Too bad someone wouldn't educate my neph on programs that might help his patients, or that 2 seconds is not long enough to see a patient.  He came into the unit today, asked me how I was, I said good, and he was gone.  I had questions, but I never got the chance to ask.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
okarol
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« Reply #15 on: November 03, 2010, 04:27:09 PM »

Next time, instead of "good," maybe you could say, "I have some concerns. I need to ask you a couple of questions."
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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
Riki
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« Reply #16 on: November 03, 2010, 04:34:32 PM »

he was gone before I said anything. I'm thinking he just wanted to get on to the next guy, cuz he has a lot more problems than I do
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
okarol
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« Reply #17 on: November 03, 2010, 04:37:01 PM »

Jenna could make an appointment to see the neph, aside from the clinic rounds when they see everyone. Can you do that?
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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
Riki
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« Reply #18 on: November 03, 2010, 05:46:15 PM »

They say that we can, but he's never in the office
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
carol1987
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« Reply #19 on: November 08, 2010, 11:25:17 AM »

Updated in first post
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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...)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #20 on: November 08, 2010, 11:34:13 AM »


Luckily there's a large pool of participants so hopefully you'll be matched again soon.  :cuddle;
Logged


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
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