Ways to Advertise: How Did you Find a Kidney Donor?

Posted by Judyth @judyth, Jun 24, 2019

I’m looking for advice on ways to advertise that I’m looking 🔍for a kidney donor. Thanks. Juds

Interested in more discussions like this? Go to the Transplants group.

Hi Judy, This is a great topic to start. I expanded your title a bit.
The Recipient Toolkit on the Transplant Page is an excellent resource that can provide you with some additional information, including how to find donors and where to look and advertise.
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
I'm bringing @jolinda @IWantToBelieve and @jtannen1 into this discussion as they have first-hand experience in looking for living donors.
Judy have you considered using social media, like Facebook or CaringBridge to look for a donor?

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All social media (Instagram, Facebook, Twitter etc) is helpful but it is my experience that you need a webpage or blog to direct people to. I have read articles about this and what it does is allows people to go to that site and learn what they need, be able to contact you and the site can be shared even when you are not posting things. I am not computer savvy so I started a caring bridge site (caringbridge.org). It is simple and free and you can put journal entries to keep followers or visitors updated on your health and progress. I also made 5×7 cards and placed them at businesses I frequent, with their permission of course. And I have a magnet on the back of our truck and a tire cover on our Jeep with my need and my cell phone number. I have had very little traffic from the car advertisements but it only takes one. I did have one person take a photo of the magnet and post it on FB and got a call from that (the person was denied). Whatever advertising you need to be consistent with sharing your need, your story and educating people about kidney transplants, living donors, dialysis, and the size of the waitlist.

Good luck…and don't give up!

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@gibtan120

I have been through running on dialysis since August 2015. Would you please help me to explore a potential living donor by sharing my information in your network?

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@gibtan120 Welcome to Mayo Connect. We are all patients, caregivers, and family members who share our journeys and experiences with others.
I think this request would be better served in the "transplant" group, and ask @colleenyoung to move it there. https://connect.mayoclinic.org/group/transplants/?pg=3

Are you listed at a transplant center at this time? Have they given you any indication of the usual wait time for a transplant in your area? My husband was listed at his local transplant center, then chose to double-list, adding a second transplant center. That second one is where he received his new-to-him kidney about 4 years ago. I have also heard that in some cases, if you are a veteran, they might transport you to another area to get a transplant where the wait time is less.

Choosing to look for a living donor can be done in several ways. Let your family know, let your friends know. Wear a shirt or jacket with your message that strangers will see. Put a bumper sticker on your car. Contact your social groups and let them know, along with your spiritual/faith community. If you have a facebook page, post on there.

I wish you luck and a resolution soon. There are so many people waiting for organs!
Ginger

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I have been through running on dialysis since August 2015. Would you please help me to explore a potential living donor by sharing my information in your network?

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@gibtan120

I have been through running on dialysis since August 2015. Would you please help me to explore a potential living donor by sharing my information in your network?

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Hi @gibtan120, you'll notice that I moved your message to this existing discussion in the Transplants group about ways to find a donor. I did this so you can connect with other members like you who are seeking a donor and finding creative ways to do so.

You'll also find tips in the toolkit, blog post and related discussion:
– Recipient Toolkit on the Transplant Pages is an excellent resource that can provide you with some additional information.
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
– Finding a Living Donor https://connect.mayoclinic.org/page/transplant/newsfeed-post/finding-a-living-donor/
– Waiting for an altruistic donor https://connect.mayoclinic.org/discussion/waiting-for-an-altruistic-donor/

Gibtan120, I know this is hard, especially being on dialysis for over 5 years. What are you currently doing to let people know you're looking for a kidney donor?

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I wish all of you great luck in finding your living donor. As a heart transplant patient I was not so fortunate and had to count on someone else's misfortune. I can say that there were some people in my life that I wanted to point to and say, "Give me his heart" but was told by Mayo and my lawyer that was illegal.

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The National Kidney Foundation runs workshops on finding a living donor throughout the year. The local branches have been having virtual meetings via Zoom calls while Covid has prevented on site events. NKF MN lists registration on their Facebook page. Transplant centers like Mayo, Henipin County and The University of MN have surgeons or nurses volunteer to speak as well. You will hear various methods people have used. It is called The Big Ask The Big Give.

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Hi I am in the need of a kidney transplant, is there anyone donating?

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@dianafrenza, I want to welcome you to Mayo Clinic Connect and i would like to offer my support as you navigate your health journey toward a kidney transplant. I received my liver and kidney transplant in 2009 from an anonymous deceased donor. I did not have the opportunity to seek a living donor, but I know that other members on Connect will be willing to share how they spread the word about their need for a living kidney donor.
I would like to connect you with others, but first, can you tell me a little more about yourself –
Are you currently approved for a kidney donation and on the UNOS organ transplant waiting list? I think that most have started by asking family members and friends. What has your transplant team suggested for you to do as you search for a donor?

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@dianafrenza

Hi I am in the need of a kidney transplant, is there anyone donating?

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Hi Diana, I'd like to add my welcome. You'll notice that I moved your question to this discussion where members offer suggestions on how to find a donor. I encourage you to read through the past posts starting here:
– Ways to Advertise: How Did you Find a Kidney Donor? https://connect.mayoclinic.org/discussion/ways-to-advertise/

I look forward to learning more about you and where you are on the transplant journey.

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@rosemarya

@dianafrenza, I want to welcome you to Mayo Clinic Connect and i would like to offer my support as you navigate your health journey toward a kidney transplant. I received my liver and kidney transplant in 2009 from an anonymous deceased donor. I did not have the opportunity to seek a living donor, but I know that other members on Connect will be willing to share how they spread the word about their need for a living kidney donor.
I would like to connect you with others, but first, can you tell me a little more about yourself –
Are you currently approved for a kidney donation and on the UNOS organ transplant waiting list? I think that most have started by asking family members and friends. What has your transplant team suggested for you to do as you search for a donor?

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Hi Rosemary,

Thank you for your response. I am 51 years of age, and the medications I have been taking for depression 30 years ago have affected my kidneys. I have been seeing a Kidney Specialist for about 10 years, and she has been closely monitoring my Creatine levels. They have been stable but I always knew I had 30% of my kidney functioning. As of 2020 I now have 16% of my kidneys functioning, and if I don't get a transplant donor and reach 11% I will have to get dialysis. I tried to reach out to family and friends but I do not know about the UNOS organ transplant. Where about are they located? I live in Canada, Hamilton. Where about do you live and is UNOS organ transplant all parts of the world? My Kidney Specialist recommends that I find a donor ASAP, but I am not on the UNOS list. Also, I thought one could wait many years before getting a donor?

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@dianafrenza

Hi Rosemary,

Thank you for your response. I am 51 years of age, and the medications I have been taking for depression 30 years ago have affected my kidneys. I have been seeing a Kidney Specialist for about 10 years, and she has been closely monitoring my Creatine levels. They have been stable but I always knew I had 30% of my kidney functioning. As of 2020 I now have 16% of my kidneys functioning, and if I don't get a transplant donor and reach 11% I will have to get dialysis. I tried to reach out to family and friends but I do not know about the UNOS organ transplant. Where about are they located? I live in Canada, Hamilton. Where about do you live and is UNOS organ transplant all parts of the world? My Kidney Specialist recommends that I find a donor ASAP, but I am not on the UNOS list. Also, I thought one could wait many years before getting a donor?

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Diana, As a resident of Ontario, Canada, you will find the information you are looking for on the Trillium Gift of Life website: https://www.giftoflife.on.ca/en/

Another helpful website is the Ontario Renal Network https://www.ontariorenalnetwork.ca/en

This webpage explains how kidney transplantation works in Ontario.
https://www.ontariorenalnetwork.ca/en/kidney-care-resources/living-with-chronic-kidney-disease/about-transplantation
The Kidney Foundation of Canada offer tips here on how to find a donor https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor#

Diana, have you been referred to one of Ontario’s 6 transplant hospitals? Have you told family and friends that you may need a living donor?

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