Many don’t know where to begin looking for a living kidney donor. It may be overwhelming trying to deal with CKD or ESRD, let alone thinking about kidney transplantation. It may be wise to gather as much information as possible about living donation and kidney transplant first. You can learn more about living donation by talking to your nephrologist or other members of your healthcare team. You can also get more information online by going to https://transplantliving.org and sharing it with your loved ones. Another good resource is the living donation section of the United Network for Organ Sharing (UNOS) website at https://unos.org/transplant/living-donation/.

Many of your family or friends may not know about living donation, and some may not even know you need a kidney. Make a list of people you want to tell your story and include as many people as you can, your family and friends, folks you know through your work, school, church, or through social gatherings.

Think about the story you want to tell these folks. Write about your journey with kidney disease, and how it made you feel and how you dealt with it. Write about your need for a kidney transplant. Your story can be simple or complex. Once you start writing, it may flow easily. Decide how you would tell your story and what you would want a donor to know about you and kidney failure to make it effective for your reader. Your social worker or your friends can also help you talk about your journey and kidney story.

Once your story is complete, get together with your close family and friends and people you trust in a private area to share your story. This could be at your home or family’s home, church or even in a common gathering place. Choose a place that makes you feel comfortable to talk.

Getting the word out is the next big step. There are many ways people have used that has been effective to make other people aware of their needs. In addition to in-person storytelling, sending a letter or email to people who care about you lets you speak personally and privately about your condition. This allows people to think about your situation and about their role without needing to respond to you right away. This may open the door for questions they may have about living donation and allow them to talk with each other about your need for a living donor. It gets the conversation and discussions going once they understand kidney disease and your treatment options.

Depending on your situation, it may also make sense to spread the word at your work or at your church. There may be a place at work where you can post your story like a bulletin board or write it in a newsletter or company blog or website. You may want to give a presentation or have a friend or family member give a talk about kidney disease and transplantation at your church or workplace gathering. You can also contact your local news to see if they’ll run a story about you and your need for a living kidney donor.

To help your story reach a larger group, you may want to use social media to share your story. However, you must be careful as some people have tried to take advantage of vulnerable patients by offering a kidney for money which is illegal and waste everyone’s time including the transplant centers. Each transplant center may have their own rules about living donors found on social media that are unrelated to you. It is a good policy to ask first. When posting on social medial control your privacy settings so that you only inform those who you know and are “friends” with you. It is advisable not to put names or phone numbers of your physicians or the transplant center staff in your posts.

To help you build a movement to get the word out that you need a living donor and a kidney transplant, you can visit Living Kidney Donors Network website at http://www.lkdn.org/kidneykampaign/index.html. You can also become a UNOS Ambassador and get access to their free brochures and their kidney kit at https://unos.org/community/unos-ambassadors/. The kit includes printed materials that you can use to educate your community about organ transplant and donation. To be inspired about kidney donation you can watch multiple videos at the National Kidney Foundation “The Big Ask, The Big Give” website at https://www.kidney.org/transplantation/livingdonors. You can also talk to a trained professional at the NKF Cares help line at 844 224 4275

If you think you cannot do all this by yourself, then you should find a kidney coach who is willing to do this for you. A kidney coach is someone who worries about you like a spouse, family member, or a close friend. Their job is to spread the word about your need for a living donor kidney transplant.