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Author Topic: I'm Going To Be Doing A Paired Exchange For My Transplant!!!  (Read 7539 times)
Cordelia
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« on: March 07, 2012, 05:13:13 AM »
My doctor called my husband and I lastnigt......we are going to be going into the paired exchange program most likely!!!!!!!!! We're going to look into the local in-center one likely FIRST and the national one, as a back up choice!        :bandance;      :bandance;      :bandance;     :bandance;     :bandance;    :bandance;

I'm excited, really excited ........my husband is worried whether or not if we go through the national paired exchange, it would  possibly require extensive travelling and he's worried about that, which I don't blame him. He's the one who works, not me.  So naturally, I understand where he's coming from.

But, this is my only chance. My doctor told me that if he was to give me a kidney, I would most likely reject it very soon after.   :(    So this is what he presented to us.......

Please keep us in your thoughts and prayers.....we really don't know much at this point about the national paired exchange program and we are waiting to get more detailed info from my co-ordinator!         :thumbup;

Something else: I'm totally okay with the fact that it won't be my husband's kidney going inside of me but my husband feels as though he's let me down and I tried to reassure him that I was not upset. Oh, this is so hard trying to convince him. He's just devastated that its not going to happen the way we had planned last year that he would donate to me.

This is all so exciting and nervewracking!!!!!!!!!!   LOL         ;D
« Last Edit: March 07, 2012, 05:29:28 AM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
amanda100wilson
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« Reply #1 on: March 07, 2012, 05:30:37 AM »
My husband and I are on the paired list as I have a very high antibody level.  I don't know why your husband would feel that he has down because he hasn't.  You will get a kidney because he is going to donate to someone else.  So he is helping you to the same extent as if he were giving the kidney to you.  Are you completely sure that he is not ambiguous in his feelings about donating to someone else?  He should only do this if he he is completely comfortable with this.
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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...
Cordelia
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« Reply #2 on: March 07, 2012, 05:38:14 AM »
Yes, I have told him the same thing.....that he has not let me down. I have told him that he essentially that he would be helping TWO people and that is just an incredible thing!   
« Last Edit: March 07, 2012, 05:59:17 AM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
wj13us
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« Reply #3 on: March 07, 2012, 06:16:06 AM »
Cordelia:

Congratulations.  I think the paired donor concept has been one of the best improvements they have made in kidney transplants in a long time.  Living in the Baltimore region near Johns Hopkins I'm always reading the size of the "chain" they are doing now.  I think the largest so far has been 6, maybe even more than that.  I'm not sure about the traveling though.  Do they bring everyone together or just fly the kidneys to the appropriate area?

Bill
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MooseMom
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« Reply #4 on: March 07, 2012, 09:13:43 AM »
That's wonderful!!!!!!  And I agree with you...he is helping TWO people!  What can be better than that?
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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."
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« Reply #5 on: March 07, 2012, 03:19:09 PM »
 :bandance; :bandance; :bandance;

This is fabulous news!  Tell him that those of us who had to wait on the list think he is a rock star!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Cordelia
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« Reply #6 on: March 08, 2012, 11:35:18 AM »
Thanks so much for your congrats, everyone!  I'm just over the moon reading your comments here.....       :grouphug;

It's good to know now where my husband and I stand. I'm relieved for that. We've been testing off and on over the last year and I got medical clearance in the fall, my husband got medical clearance just a couple weeks ago. I've been on the list since November and was told it would likely be a 4-5 yr long wait. This alternative gives me hope!        :flower;       :cheer:

I'll keep you all posted!         :yahoo;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
mcclane
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« Reply #7 on: March 16, 2012, 03:25:23 PM »
Congrats cordelia !  :bow; :bow;

If the paired exchange is in calgary, let me know, and I'll visit you in the hospital.  :2thumbsup;
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Cordelia
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« Reply #8 on: March 18, 2012, 02:21:11 PM »
Quote from: mcclane on March 16, 2012, 03:25:23 PM
Congrats cordelia !  :bow; :bow;

If the paired exchange is in calgary, let me know, and I'll visit you in the hospital.  :2thumbsup;

That would be so awesome, Mcclane!       :2thumbsup;       :clap;

Just a little update here:

My husband and I have signed the consent forms and we'll be mailing them off tomorrow in the mail!        :bandance;       :bandance;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Chris
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« Reply #9 on: March 18, 2012, 05:18:17 PM »
First, congrats!

Second, it seems odd to me that they did not explain how things work when they offer you the national paired exchange.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
okarol
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« Reply #10 on: March 18, 2012, 11:58:39 PM »
Exciting news! How many centers are active in the paired exchange program? Best of luck to you both!  :2thumbsup;
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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
Cordelia
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« Reply #11 on: March 19, 2012, 04:01:55 PM »
Thanks so much, Chris and Karol!       :bandance;       :yahoo;

We got the package, the pamphlets after we got the call that this would be a good route to go.     Sounds as though there are different kinds of exchanges.  Paired and Domino.

I think from what my co-ordinator said, Vancouver, BC, Otttawa, London and Toronto Ontario are just a few of the other hospitals that are included in the national paired exchange program.

There are no guarantees though once my husband and I make it on the computer system that a match is found right away. We may not 'make' it for the next one this coming summer which would then bump us even further out waiting.       

It's a very complicated, intricate and thorough process too by the sounds of it.  It won't be done quickly.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Chris
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« Reply #12 on: March 19, 2012, 08:58:05 PM »
I do not know enough, especially the differences in Canadaa to ask a question withouut further research.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #13 on: March 20, 2012, 06:18:59 AM »
Great news.  Your husband just needs some time to wrap his head around him going through surgery and you still being on dialysis. 
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Cordelia
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« Reply #14 on: March 21, 2012, 05:13:24 AM »
I like to read. I'm looking into getting more info       :thumbup;

Thanks for your congrats too, Rerun!  I agree what you said about surgery and D!      :thumbup;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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« Reply #15 on: March 26, 2012, 08:52:11 AM »
We signed the consent forms this week so we'll see what happens!       :bandance;     :bandance;     :bandance;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
sandra3105
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« Reply #16 on: March 26, 2012, 09:03:08 AM »
same here  :2thumbsup; myself and daughter and doing a 3 x way swap in May, have to go for all the tests 1 month prior to ensure all 3 couples are still as fit and healthy as when they signed up.  on PD 3 years then for last 3 months been training 3 days a week to use home dialysis - i am still training and will do until Op - glad that i have used the haemo machine prior to t/plant so if it fails :stressed; i wont be scared to death of doing it. only issue i have in my head is that she is giving her kidney to a stranger but as she says "the end result is the same " - i hear negative remarks about kidney t/plants of patients and its always those it has not worked - drugs are dangerous etc........ tryin to put negative thoughts in my head but i always think that the glass is half full  :beer1; good luck to your Op and hopefully we can see in a few months how we get on  :thumbup;
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APD since dec 08 kidney disease since childhood.
Cordelia
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« Reply #17 on: March 27, 2012, 09:01:54 AM »
Hi Sandra, congrats!!!!      :2thumbsup;       :clap;     A 3 way swap, that's really awesome! I'm so happy for you!! I hope everything goes smoothly!       :flower;     What kinds of tests do you have to have the month before?  What has been the length of time it has taken since a kidney was found for you?  I was told it could be about a month from the time a match is made to operation, but I know that can really vary. Just wondering what your experience has been.

Thanks for your best wishes!    :cuddle;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
sandra3105
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« Reply #18 on: April 11, 2012, 09:12:18 AM »
hiya not been online since that last one as  i only have computer at work, however got the new I phone ! we got the call ( whilst i was training in the unit ) in mid of february - the pre-op is may 1st and today we had the admissions letter for the 16th may, but as there are 3 couples the variables are higher for something to go wrong ie pull out ( which has happened a few times ) or illness etc... just been on website to read up on the Op, time in hosp. etc but will find out deffo info on may 1st - it has just sunk in really that it is happening but also keeping perspective as the cadavar kidney failed on the table but fate that was 17th nov and this one 17th may exactly 6 months ooh spooky - ( will keep posted on developments )  :thumbup;
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APD since dec 08 kidney disease since childhood.
Cordelia
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« Reply #19 on: April 11, 2012, 09:28:53 AM »
Hi Sandra!

Oh please, keep me posted on your developments, I'd so love to hear how things go for you!!

Hmmmm makes sense: The more people involved in a chain, the higher risk of someone having to drop out for whatever reason.       Yikes!

Hugs to you-and good luck!!!!       :cuddle;   
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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« Reply #20 on: May 04, 2012, 05:19:38 AM »
My transplant coordinator called me yesterday afternoon. She told me that my husband and I have now been officially added to the computer system!

Appparently they should know better in June whether or not there is going to be a potential match, OMG, I"m going to be wanting to fast forward to June now! LOL LOL I'm so excited!!!!         :)           :bandance;         :cheer:   
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
mcclane
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« Reply #21 on: May 04, 2012, 06:59:54 AM »
Quote from: Cordelia on May 04, 2012, 05:19:38 AM
My transplant coordinator called me yesterday afternoon. She told me that my husband and I have now been officially added to the computer system!

Appparently they should know better in June whether or not there is going to be a potential match, OMG, I"m going to be wanting to fast forward to June now! LOL LOL I'm so excited!!!!         :)           :bandance;         :cheer:
that's really good news, june is right around the corner too !  :bow;
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jeannea
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« Reply #22 on: May 04, 2012, 12:17:12 PM »
That's great! June is just around the corner. Good luck!
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Cordelia
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« Reply #23 on: May 04, 2012, 09:07:33 PM »
Thanks so much, Mcclane and jeannea!  I'm hoping.......praying        :bow;        :bow;

Thanks so much for your best wishes!       :grouphug;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
MooseMom
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« Reply #24 on: May 04, 2012, 09:58:05 PM »
Oh man, your summer is going to be fantastic!!  I am so happy for you! :clap;
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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."
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