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Author Topic: Are you on the road to transplant?  (Read 5224 times)
natlarson
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« on: October 11, 2010, 11:42:11 AM »

I ask, because I'm on the road to my second transplant. And there's a multitude of differences from the last "BIG SHOW". The biggest and most impressive, is 'PAIRED EXCHANGE' this is for those of us that have an incompatable donor, we have the blessing of being able to be put into "runs" and paired with other pairs (incomatable donor and reciipient) where both donors and recipients match up with an exhchange. Talk to your social worker, if they can't get anything workin for you. contact NEPKE, (New England Program for Kidney Exchange, Paired Donor Network,UNOS (United Network for Organ Sharing) ALL these programs are exchange and chain programs. I'm awaiting my second kidney transplant, my PRA level is 91%. If that's a number you're not familiar with, and you're awaiting transplant, you're not as well informed as you should be PRA is number used to determine your Antibody level in comparison with the antogens in the world. A pra of 91% means I hold a bank of antibodies for 91% of the antogens in the world. So if nothing else Make the effort to learn of what your pra level is. It's not as bad as it sounds.....Transplants take place with a pra 100%. It's important when on the road to transplant, that there will be victories and defeats. If you can breathe you must press on. I find when I'm on the edge of throwing in the towl, if I press myself, just one more inch further, somethign comes along to boost my spirits, if only long enough to the next "boost". Never give in, never accept defeat!!
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okarol
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« Reply #1 on: October 11, 2010, 12:33:22 PM »

Not all centers use paired donation programs, but if yours does that's great.
You may check and see if your hospital is part of the National Kidney Registry. They pool over 50 centers to make swaps. They even fly the donor kidneys so people don't have to go outside their local community to donate and recover. More info here: http://kidneyregistry.org - Good luck!
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
MooseMom
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« Reply #2 on: October 11, 2010, 06:53:30 PM »

My transplant center is in the early stages of setting up a paired exchange program.  It's a lot more complicated than you think.  My tranplant coordinator was telling me that sometimes the nastiest side of people comes to the fore, and it is common for one pair to think what they are offering is somehow better than what the other pair is offering.  I had never thought of that before, but it made me realize that you have to find a pair that matches you psychologically, also.
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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."
okarol
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« Reply #3 on: October 11, 2010, 11:18:25 PM »

While there are straight swaps, it's unlikely that it would be a 2 couple exchange. It's more complicated, finding the BEST match for the recipients, so often it's a 6 or 8 way swap. I wonder why your hospital is starting their own program when they can join an existing program. Trying to match in a smaller pool takes a lot longer, and the likelyhood of having many good matches is less.
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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.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
MooseMom
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« Reply #4 on: October 12, 2010, 05:39:36 PM »

While there are straight swaps, it's unlikely that it would be a 2 couple exchange. It's more complicated, finding the BEST match for the recipients, so often it's a 6 or 8 way swap. I wonder why your hospital is starting their own program when they can join an existing program. Trying to match in a smaller pool takes a lot longer, and the likelyhood of having many good matches is less.

I have no idea. ::)  But two other transplant centers in Chicagoland have been in the news a lot lately for some long donor chains, so I think it is only a matter of time before my center grabs some of the action.
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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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