Request Suggestions: How did you find a living donor?

Hello,
I am sorry you and your son are dealing with this. I remember how frightened I was. Here is how I constructed my letter. I wrote it in April, and was matched three months later. I had my transplant 3 and 1/2 years ago, with a live donor, not physically related in any way. I sent my request letter to everyone I knew, asked them to pass it along to everyone they knew. I shared by emails, Facebook, Instagram, etc. Words in parenthesis are my words of instruction to you:) I am sending positive thoughts and wishing you and your family well. Feel free to reach out, whenever you need to.

Dear Friends and Family;

(Create human connection.)
As some of you may know, I am in the process of being tested to be placed on a kidney transplant list. I tend not to talk about my health challenges very often, as it is not a happy topic and I don’t like to give negative things a lot of focus. I am also not comfortable asking for help. As it turns out, my kidneys show very little interest in where my personal boundaries begin or end. And so, I write.

(Describe your health issue)
Over time, my kidneys have created cysts, which have squeezed out my healthy kidney function, causing my kidneys not to work well enough to keep me alive on their own much longer. This is what I am facing, and my treatment options are limited to dialysis or a kidney transplant.

(Treatment options and survival rates, my info might be outdated. And the reason, you have a strong drive to survive. Mine was my family and my work)
Getting regular dialysis treatments, my doctor recommends 5-6 times a week, will help my kidneys do their job and keep me alive (the average life expectancy for a person on dialysis is 5 years). A transplant would offer me better health, more freedom, and the energy to continue to do what I love most: raising my children, ages 11-21 with my husband (which is my heart) and teaching dance (which is my oxygen). Living kidney transplants offer an average life expectancy of 12-20 years, as opposed to deceased transplants which average 8-12 years. With over 100,000 people on a waiting list for a deceased donor kidney, the wait will be 6 years or more, and sadly, time is not on my side.

(Tell them what you are asking & any encouraging survival info)
Asking family members, friends and coworkers to consider donating a kidney is a difficult thing to do. However, my doctors have communicated that going public greatly improves my chances of finding a living donor match. I am an excellent candidate for a kidney transplant in that I am active, healthy, relatively young and the disease I have will not attack a new kidney.

(Give them basic info about transplant, again mine might be outdated)
You might not know a lot about living donation. The thought of surgery and living with one kidney can be a bit overwhelming. Here’s some basic information about kidney donation:
• You only need one kidney to live a long, healthy life. Here’s a short video of a donor’s journey https://youtu.be/3meff7iep5g
• Most donor surgery is done laparoscopically, meaning through tiny incisions.
• The recuperation period is relatively short.
• The cost of your evaluation and surgery will be covered by my insurance.
• You will have a separate team of healthcare professionals to evaluate you as a living donor. Their job is to help you understand the risks and benefits and look out for YOUR best interests.
• All of this can be done anonymously – not even I need to know your identity

(Offer contact information, if they are interested & let them know it is confidential)
If you are interested in determining if you might be a match for me, you may contact Kelly Coffey, Donor Coordinator, IU Health at (800)382-4602.
This process will be completely confidential. If you prefer to talk directly with me, please feel free to contact me. I realize that donating a kidney is not the right decision for everyone. If kidney donation is not right for you, you can still help by considering becoming an organ donor after death. If you have a group, Facebook friends, or organization you would be comfortable sharing this letter with, I would greatly appreciate your help. The more people who know, the greater chance for finding a match and the greater opportunity to educate people about the gift live kidney donation offers!

(Offer other credible sources for info)You can learn more about living donation on the National Kidney Foundation (NKF) at: http://www.kidney.org/livingdonation If you have any questions you may contact their confidential helpline at (855.653.2273). If you want to talk to someone who’s already donated a kidney, NKF can also help.

(I offered my personal contact info. This is a personal choice)
Thank you for your consideration,
Stephanie Pairitz
< email address>
(ALWAYS include a photo of yourself, preferably with family. A picture is worth a thousand words.)

The reply from @stephanierp is great! I have also seen people who wear a button, or T-shirt, telling others they need a kidney, with contact information. Essentially, your son is "marketing" himself to get a kidney.

My husband received a deceased donor kidney 10/1/2016. His two children initially commented they would be tested to see if either one was a match, but that never came to fruition. He has been blessed with renewed life, and is forever grateful to his donor and the family.
Ginger

Our daughter got a window vinyl made that says, “My Mom Needs a Kidney” and then an email address that she set up for responses. She took a picture of it on her vehicle and posted it on Facebook. She included my name, blood type needed, the number assigned to me for the transplant, and the location I was going to which was Mayo in Rochester.

The Facebook post was shared by many, and there were a few people that were willing to donate. One woman was an answer to our prayers. We started praying for a donor to be ready if I was approved. She saw the post in the afternoon and didn’t sign up right away but thought she could do that. During the night, she suddenly woke up and knew she was supposed to give me a kidney. She didn’t even know me but she knew that God wanted her to do this.

It has been such an amazing gift! The staff at Rochester, MN Mayo Clinic have been awesome too.

God bless and good luck!!!

Picture of the window vinyl that got me a living kidney donor. My transplant was 12-30-2022.

We are starting the process to find a living kidney donor. He has PKD and is on peritineal dialysis and is really being challenged and suffering with infections, ruptured cysts, nausea, extreme fatigue, etc. So, we are feeling he urgently needs a donor. If you and your family or friends found a donor, how did you do this? What was successful? What information did you tell people that you think made a difference?Any advice or suggestions would be greatly appreciated.
Wishing all of you all the best!

@kzeiss I have CKD stage 4 and have been looking for a living donor (to no avail) since 2016. But I am a Christian believer and can attest that if a transplant is meant to be it will happen in God’s way & timing. A donor will be provided. I needed a pancreas transplant. I left the situation in God’s hands and was transplanted in 2005 just 2 1/2 weeks after being listed. I’d been told it could take several years. The match was nearly perfect and I’ve never had a rejection problem. It has been almost 18 years. Don’t give up hope. I will keep you in my thoughts and prayers.

@kzeiss, congrats on starting the process to finding a living donor. I moved your post to the original discussion your started because I wanted to make sure you saw the helpful posts and suggestions from @stephanierp and @jadahl. Start reading here:
https://connect.mayoclinic.org/discussion/living-donor-request-suggestions/
I'm also tagging members @tjdog @2gallonhabit @scstrickler @journey1 to share how they found their donor.

In the meantime, you might appreciate these tips from the Mayo Clinic transplant team on the blog:
- Finding a Living Donor https://connect.mayoclinic.org/blog/transplant/newsfeed-post/finding-a-living-donor/

And this related discussion:
- I need information to add to a post on Facebook for a living donor?
https://connect.mayoclinic.org/discussion/i-need-information-to-add-to-a-post-on-facebook-for-a-living-donor/
You're asking great questions and I look forward to reading the responses.

Thank you very much, Colleen!

Hi @kzeiss. Different things work for different people so TRY THEM ALL!!!

I posted the following on Facebook and had multiple people come forward. Almost exactly one year later I was transplanted through paired donation. My best friend post-college stepped forward to donate but she was not a match. So she ended up donating to a dear woman in Atlanta and I received a kidney from someone in Minneapolis. So if people say "if only I were a match...", that's the beauty. They don't need to be.

Best of luck to you and your son. Reach out if you'd like to know more about Paired Donation and Vouchers. Keep the faith. Hugs and prayers.

Where have you posted your need for a kidney donor? We have a website kidneydonor.care, and I am looking for some places that maybe we haven't thought of.