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2gallonhabit (@2gallonhabit)

Experience with Paired Kidney Exchange?

Transplants | Last Active: Aug 3, 2022 | Replies (10)

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@colleenyoung Thanks for your response. You are correct in your assumption. I've been able to find quite a bit of info about Paired Exchange from the donor's perspective but pretty much nothing about it from the recipient's. My transplant doctor said it would happen in a couple of weeks but my nurse said 1-3 months. We (my donor) were contacted about a potential match a month ago but it fell through (but she wasn't told that until she reached out to the coordinator a week later). Is this normal? I feel like we're falling through the cracks. Thanks.

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Replies to "@colleenyoung Thanks for your response. You are correct in your assumption. I've been able to find..."

@2gallonhabit – Thanks for the great questions! As you probably know, there is really no "normal" when it comes to organ donation. So much goes into signing up for the process, evaluation, and making a match. It is definitely an individual situation for each patient. We also completely understand the frustrations of the recipients. As your team likely told you, the donor and recipient teams are separate. We want to make sure each person in the process has their own confidential evaluation and decision, so those teams don't cross over. That means there is sometimes frustration on the part of the donors who don't know what's happening with the recipient and the recipients who don't know what's happening with the donors. In your case, I would highly encourage you to reach out to your recipient team and ask if they are able to clarify the process for you. You should encourage your donor to do the same and reach out to their donor team to see what's happening with the paired exchange process. You can use the patient portal, or you can call your team using the toll free phone numbers. The process for paired donation can be unpredictable. One patient may match in a week and it may take several weeks for another patient. I hope your situation is resolved soon so you can get your transplant! I am happy to respond to more logistical questions if you have any. Thanks!

@2gallonhabit, I can understand how you might feel that you are falling through the cracks. I hope that you saw the reply that @keggebraaten posted to you on July 4.
Have you had contact with your transplant team? Were they able to provide you with any encouraging answers?