Experience with Paired Kidney Exchange?

@danhoe shares about her experience with paired kidney donation as the donor in this related discussion:
- Donating my kidney: Any tips? What do you wish you'd known? https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/

And @mauraacro and @lwilkey here:
– Post donation: check in one year later https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/
and
– Kidney transplant from the donor's side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

@2gallonhabit, but if I understand correctly you are seeking info from the recipient side as you wait to be matched. @mrasmith15 @keggebraaten may have some information she can share regarding the Mayo Clinic experience and communications you can expect.

@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.

@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!

I was approved to donate my kidney with paired donor exchange in late Jan 2022. This was done at Mayo in Minnesota. I donated 3/31/2022 at Mayo and my son received a kidney at Mayo the same day 3/31/2022. A total of 3 donors and 3 recipients on 3/31/2022 either donated or received a kidney . Paired donation is the best way to go unless you have a direct match. Our wait was not long at all.

@glengelmdl that is great. I have CKD stage 4 and have been told that dialysis &/or kidney transplant is in my future. I am a huge fan of paired donor exchange. I’ve been looking for a willing donor (matching or not) for about 6 years. So far nothing. Trying to keep the faith.

I see usually family members or close friends. I am almost 72 and was originally turned down at Mayo Jacksonville. I had my testing sent to Mayo Rochester and was approved. Good to talk to people about it. God will provide in his time. My job is to do the footwork. Mayo Clinic is Excellent!! Top center in the US and probably the world for kidney transplant!

@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?

@glengelmd1, Your experience sounds amazing. What a blessing to be able to give a kidney to your son!
Do you take photos? Like to use words? Here are 2 transplant discussions that I want to share. I invite you to share your experience to encourage others to think about living organ donation.

Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

@glengelmd1 - What would you say to someone who is hesitant to begin the living donation process?

Hi @rosemarya. Thanks for your response. I checked with my transplant nurse but she was unable to give me any information other than I'll be contacted when they have a match (& to let her know once I'm contacted). I'm fortunate that my donor shares any info she's given but neither of us has been contacted in a month and a half. I'm trying to stay positive but am starting to get very anxious.

@2gallonhabit, I want to let you know that I'm thinking about you.
As a recipient who was on the waiting list for a liver and kidney, I know how awful the waiting and unknowing is. How are you passing the time as you wait?