Having Your KIDNEY Donor Find YOU!
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Introduction and Overview
Click here to watch - 2:48 mins.
Creating Your Team
Click here to watch - 2:16 mins.
Developing Your Story
Click here to watch - 2:49 mins.
Telling Your Story - in Person
Click here to watch - 2:03 mins.
Telling Your Story - Using Email
Click here to watch - 2:28 mins.
Telling Your Story - Social Media
Click here to watch - 2:38 mins.
Telling Your Story -Getting Creative
Click here towatch - 2:58 mins.
Donor/Recipient Compatibility
Click here to watch - 3:03 mins.
Paired Exchanges
Click here to watch - 2:00 mins.
Summary
Click here to watch - 1:50 mins.
Imagine the frustration of having a kidney donor who is willing and healthy enough to donate but they are not compatible with you. This happens to approximately 30% of potential donors.
As a result of medical technology, better anti-rejection drugs and paired exchanges, (also called swaps or chains), these incompatible donors are able to help their intended recipient by donating to another recipient who also has an incompatible donor. In short, these two recipients swap their incompatible donors. (I’ve used two pairs for this example, there could be many pairs in a paired exchange.) Paired exchanges have the potential of increasing the number of kidney transplants by thousands a year if a centralized national program is developed that will register ALL incompatible pairs. The likelihood of being matched with another incompatible pair is increased when there are many incompatible pairs within your pool or when you register with many different paired exchange programs.
The Conundrum
Unlike the waiting list for a deceased donor kidney, there isn’t one national paired exchange program that lists all incompatible pairs. Here are the different types of paired exchange programs that have been developed:
Here’s a list of the three “co-op” organizations: (National Kidney Registry is doing more paired exchanges than the other two groups.)
Alliance for Paired Donation - www.paireddonation.org
Alliance affiliated centers - www.paireddonation.org/transplant-center/
National Kidney Registry - www.kidneyregistry.org
NKR affiliated centers – www.kidneytransplantcenters.org/center/index
UNOS - www.transplantpro.org
UNOS affiliated centers - https://optn.transplant.hrsa.gov/media/3019/optnkpdppcentersbystate.pdf
You should ask if your hospital is involved with other paired exchange programs and whether they share ALL of their incompatible pairs. Some hospitals will keep the pairs that are easy to match and offer the more difficult pairs to their exchange member(s). This is not an efficient way of maximizing paired exchange programs.
The three national “co-op” organizations, evaluate pairs anonymously. When a transplant center is matching you with other incompatible pairs within their center the committee(s) that evaluates paired exchange candidates could be the same doctors that care for these patients. Knowing the identity of the patients could work in your favor or against you.
Here’s what you could do to maximize your chances of being matched with another incompatible pair:
Registering with many paired exchange programs may not be easy, but it will increase the odds of being matched with another incompatible pair.
For a more detailed description of Paired exchanges click here or go to: www.lkdn.org/LKDN_Paired_Exchanges.pdf
Click here for a printable version.
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To share this page with an advocate or someone else, simply copy and paste some of the following information in an email, with the subject line: "My Need for a Kidney Transplant"
In the body of the email you can copy & paste one of the examples below. Of course, you can edit it as you see fit.
Example:
As you know, I’m in need of a kidney transplant and I’m pursuing a living donor.
I’ve been fortunate that I’ve found an online program that’s been very helpful. It has educated me to the transplant process and provided me direction on how to develop my campaign to let others know about my situation.
Enlisting others to help spread the word, will increase my chance of success. I’m asking if you will help me spread the word.
Please follow this link - www.havingyourdonorfindyou.org/ to go to the website and watch a short Trailer about the program. It will give you a good idea of what the program is about and how you could help. To watch more videos, you’ll need to register. Registration is free.
I’ll call you in a day or two.
Thanks.
Or:
Good to talk with you the other day and thanks for your interest in helping me spread the word about my situation.
Please click on this link - www.havingyourdonorfindyou.org/ to go to the website and watch the short Trailer about the program I mentioned. To watch more videos, you’ll need to register. Registration is free.
It’s simple to watch and will provide helpful information about living kidney donation.
I’ll call you in a few days to discuss some of the ideas they suggest.
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