I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Cordelia on March 07, 2012, 05:13:13 AM
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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
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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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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!
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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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That's wonderful!!!!!! And I agree with you...he is helping TWO people! What can be better than that?
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: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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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;
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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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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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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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Exciting news! How many centers are active in the paired exchange program? Best of luck to you both! :2thumbsup;
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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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I do not know enough, especially the differences in Canadaa to ask a question withouut further research.
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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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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;
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We signed the consent forms this week so we'll see what happens! :bandance; :bandance; :bandance;
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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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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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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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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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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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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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That's great! June is just around the corner. Good luck!
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Thanks so much, Mcclane and jeannea! I'm hoping.......praying :bow; :bow;
Thanks so much for your best wishes! :grouphug;
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Oh man, your summer is going to be fantastic!! I am so happy for you! :clap;
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:2thumbsup; That's great!!
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Hi MM and Okarol, thanks so very much! :grouphug;
I'm just wishing the month of may away! LOL :rofl;
Thanks so much for your best wishes, I'll be sure to keep you all posted here :grouphug;
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This is exciting and such a blessing for your family. Your husband is a good man for donating. A real hero. Keeping you in my thoughts and prayers. :2thumbsup;
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Thank you so much, Paris! :thx; Thank you so much for your really sweet compliments on my husband. :cuddle; Thanks for keeping us in your thoughts and prayers :thx;
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I talked to my transplant co-ordinator today and she told me that Canadian Blood Services which organizes the paired exchange program, will do a June 18 listing to find out who will all be in the paired exchange, etc. Anyways it will take 2 weeks from there, for my translant team to find out yay or nay.
That would roughly take to the beginning, mid July for my husband and I to find out where we stand. That's IF they find a match.
Sounds like some of these chains are sometimes up to about 14 people, that makes me a bit nervous......but I will wait and see what becomes of this.
Getting a little closer, babysteps, I say. Who knows? ;D
My coordinator said it can sometimes take up to a few months for surgery to happen, that's hoping that nobody backs out or gets sick. ;)
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Oh it all sounds really exciting, and nerve wrecking Cordelia. I wish you all the luck in the world!
lots of love Cas
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Oh it all sounds really exciting, and nerve wrecking Cordelia. I wish you all the luck in the world!
lots of love Cas
Thanks, Cas! I'm sooo excited and nervous LOL
Thank you so much for your best wishes! :beer1;
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Good Luck Cordelia hope it all Works out!
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Good Luck Cordelia hope it all Works out!
Thanks so much, Lainiepop! :thumbup;