Finding a Living Organ Donor

My kidneys are failing or My liver is failing.

You can add more detail about your diagnosis:

1. I was diagnosed a type 1 diabetic at age 5. Diabetes harms your kidneys.
2. I developed liver cancer, but fortunately, it’s at the stage that’s curable by a transplant.

My best chance is to find a living donor and I’m sharing my story with everyone, including family and friends.

These words express a realistic sense of urgency.

Can you help me by sharing this information?

This is an easier question than directly asking someone to be a donor. Nowadays it’s common to share information about our daily lives. Ways others can help you share information: social media; an email blast to one’s network; talking with family, friends, religious groups, clubs or organizations.

Immediately hand him/her a card or piece of paper with the vital information.

This step is crucial for taking action on the information you have shared.

Suggestion: Give your friend several information cards to share. Information card should include:

1. Patient’s first and last name
2. Yale New Haven Transplantation Center – Center for Living Organ Donors: Referral line number: 866-925-3897
3. Referral webpage: ynhh.org/organdonation 

If you are a patient

Social encounter: You see a friend, family member, acquaintance, even a stranger, and he/she says, “Hi, good to see you. How are you?”

Your response: I’m doing well today but I’m not sure if you know what’s going on with me. My kidneys are failing. My best chance is a living donor and I’m sharing my story with everyone including family and friends. Can you help me by sharing this information? Hand him or her several information cards to share.

If you are a patient advocate

(Family member or friend of patient seeking a living donor)

Social encounter: You see a friend, family member, acquaintance, even a stranger, and he or she says, “Hi, how are you?”

Your response: “I’m doing pretty well today but I’m not sure if you know what’s going on with my (family or friend).

(Describe relationship and give name) has (4-8 word description of diagnosis). That really harms your (liver or kidneys). (His/her liver or kidneys is/are) failing. (His/her) best chance is to find a living donor. Friends and family are being tested but there is no available donor. Can you help me by sharing this information?

Immediately give information cards.

If you’re trying to sort out those with whom you can share your story, keep in mind these examples of community groups.

• Alumni society of college or high school
• Book club, library
• Child care, play group
• Church, synagogue, mosque or other place of religious worship
• Family and friends, Meetup group, workplace
• Fraternity or sorority
• Knights of Columbus
• Professional organizations (e.g., Rotary Club)
• Social media (Facebook, Instagram, etc.)
• Local news media including local news websites (e.g., Patch.com), community bulletin boards
• YMCA, YWCA, senior center, gym and recreation centers

Social media is one of the many tools you can use to help spread the word about your need for a living organ donor. There are numerous channels, with some of the more popular including Facebook, Instagram, Snapchat, TikTok and X. To create an account for a new channel, go to the respective website.

• Facebook
• Instagram
• Snapchat
• TikTok
• X

Social media post led to kidney donation

About a year after being diagnosed with kidney failure at age 19, Naequon learned he needed a kidney transplant. With friends’ help and support, his story was widely shared through social media and a radio program. It was through a Facebook post by radio station Jammin 107.7 FM that his future donor, Michelle, heard of Naequon’s need.

The post included an interview with Naequon, and the comments section encouraged calls to Yale New Haven Transplantation Center. She called that day and once cleared for donation Michelle became his donor in 2018.

Another option is development of a dedicated website to share your story and need for an organ donor. It’s best if writing is in layman’s terms so content is easily understood. While most of us are not skilled at creating personal websites, your family and social contacts might know someone who might be able to help you.

What to include on a website:

• Identify the person needing a transplant and share his/her story
• Define living donor transplant as an option
• Include the Center for Living Organ Donors referral webpage 

As you prepare your plan for sharing your story, please keep in mind these tips for what not to share in your approaches, whether social media, website, letter or discussions.

DO NOT include:

• Offers of compensation (e.g., money, goods, services, immigration assistance)
• Sensitive personal information including home address, telephone number, social security number, medical record number, date of birth
• Hospital staff and physician names or direct contact information
• Photographs of others without permission
• Confidential health information

Also, do not “pre-screen” potential donors by specifying blood types or other health criteria.

DO include:

Center for Living Organ Donors referral webpage. If you have any questions, consider sharing your draft materials with your Yale New Haven Hospital transplant team members (nurse coordinator, social worker, doctor).

• Yale New Haven Transplantation Center 
• Donate Life Connecticut
• American Society of Transplantation