I need information to add to a post on Facebook for a living donor?

@journey1 Welcome to Mayo Clinic Connect. You pose a very complex question here., and I would like to respond by saying, first, that I am glad you are seeking different avenues to find a living donor!

In this process, have you let your family, friends, co-workers, and faith community know of your search for a donor? Even if someone is able to pass the requirements to be a donor, they may not be a match for you, and a donation "chain" might be possible. Are you currently listed at any transplant centers? On dialysis?

As for posting on Facebook, in my own humble opinion, do not put any personal identifiers there. Your phone number or date of birth are not safe information. Something generic such as "looking for living kidney donor. Please contact me via private message".

Does this sound doable for you?
Ginger

Hello

Nothing wrong in trying any which way one can.
As the previous contributor mentioned please limit your personal information on FB or any social media outlets.
You may need the blood type and what kind of insurance you have. Typically the donor will be covered by your Health Insurance Policy.
I sincerely hope you will find one, and do not loose hope and have faith.

Take care

I did not have a living donor, but I do know that using the internet to ask for donors is one way to reach out. Here is some information that was recently featured in Mayo Connect Transplant Newsfeed Blog -

- Finding a Living Donor: Where do I start?
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/finding-a-living-donor-where-do-i-start/
Here is a patient generated conversation with tips and ideas -
- How to get the word out for a donor: ideas, tips, resources! + helpers
https://connect.mayoclinic.org/discussion/how-to-get-the-word-out-detailed-ideas-tips-resources-helpers
-
Have you asked your transplant department for suggestions about the information that they would need from a prospective anonymous donor?

Hello Journey 1,

I am Stephanie. I found a live donor by going public with my request in 2017. I had my transplant in 2020 with a live donor, who connected to me through the letter, I am sharing with you. We sent our letters to all family and friends by email and Facebook. You have to share your letter with the setting to Public, so that others can share your post. I was humbled by how many shares FB readers offered. I lost count after 200. Your friends will share it with their friends. I am happy you are going public with your Big Ask. Big Give. request. It is an incredibly difficult thing to do, but I know that it saved my life. I researched writing the letter through the National Kidney Foundation, go to website and type in Big Ask - they have A LOT of info.

I am sharing my letter with you, hoping it may help in some way. (Everything in parenthesis, is my advice to you in how to structure your letter.) My husband wrote a preamble to my letter, telling who he was and humbly asking anyone, who might be able to save my life, to consider it. Let me know if you would like me to share that, as well. It is not in my computer but I can find it. Here is the letter I sent:

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. Also offer 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. The link to a living donor's journey, I found through the National Kidney Foundation)
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 donor coordinator 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. I did not receive anything but good)
Thank you for your consideration,
Stephanie
email

(I then shared a photo of myself with my family. ALWAYS include a photo of yourself, preferably with family. Pictures create connection. A picture is worth a thousand words.)

I wish you the best of luck. Please feel free to reach out to me, if I can help in anyway.

@stephanierp Great post and letter! My husband received a deceased donor kidney October 1, 2016, after 5.5 years on dialysis. What I found interesting, is that both of his children expressed a desire to be evaluated to be a match for him, as a living donor. But then, they changed their minds for reasons still unknown.
Ginger

My transplant coordinator once told me, "You will be surprised by who tests. People you think will come forward, will not feel comfortable with it. And people you never thought of, will come forward to test. It's not about how much they love you. It is something else, entirely."

And she was right. Very few family members of mine tested. They were not comfortable with it. Which is okay, because no one owes me their kidney. My actual donor, had only met me once about 20 years before the transplant and she didn't hesitate for a minute. She said she had always thought of doing it.

@journey1, I have come across another link to share with you from the National Kidney Foundation:
Kidney Donation: How to Make the Ask
https://www.kidney.org/transplantation/livingdonors/how-to-make-the-ask
Have you been evaluated and listed for your kidney transplant yet?

https://www.fox9.com/news/hazelden-betty-ford-employees-share-gift-of-life-and-ask-help-for-coworker
This is a story about my daughter and myself, along with two of her coworkers. It was on the news recently.

@cmael This is a wonderful story! I read it with tears in my eyes, and goosebumps! My husband received a deceased donor kidney October 1, 2016. We both have had "donor" tags on our licenses for decades.
Ginger

@gingerw I’m glad that you found it meaningful. I hope that you also saw the video. Bless you for signing up to be a donor with your licenses.