Finding a Living Donor: Where do I start?

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Apr 7, 2023 | Kristin Eggebraaten | @keggebraaten | Comments (1)

Nearly 106,000 people are waiting for organ transplant and every 10 minutes another person is added to that list. While 1000s of people each year donate their loved one’s organs, it’s still not enough to meet the need. Living donation for kidney and liver transplant can help bridge that gap.

Most of us know that we can’t do life alone. We need to ask for help from family and friends often. We ask for advice, directions, help with the kids, help with our jobs and even help with simple things like which TV shows to watch this weekend. But how do we ask someone to undergo major surgery to help save our life?

Asking for a living donor is not easy. But with these tips, you can educate and answer questions of your family and friends so when the time comes for someone to step up, they know exactly what they are facing. Consider these tips when preparing to ask someone to give that ultimate gift.

Educate yourself and your potential donors.

Learn as much as you can about your organ transplant process and about living donation. It will be easier to talk to your loved ones if you are able to answer their questions about your situation. People are generally fearful of things they don’t understand. Whether you are providing social media posts, in-person conversation or written notes/flyers, education is the key. When asking someone to do something that could change lives, they need to be fully aware of all the facts. You can research facts on our Mayo Clinic website, Mayo Clinic Connect Toolkit, the Health Resources & Services Administration, and Donate Life America.

Provide honest and straightforward information about your need.

When you are faced with a medical diagnosis, speak from the heart to let people know how important organ donation is to your situation. It’s important to lead with the facts of what you are facing while still including how this diagnosis affects your life. This is a big decision for potential donors, and they need to consider all the information before proceeding. Including information such as your diagnosis, timelines, medical and surgical options, and prognosis for those options will help people understand your need. Having a family member or friend advocate for you is another option. They could talk to others about your need on your behalf.

Using the internet to ask for donors.

Social media is a fantastic way to reach the most people with a single message. By having a network of people share your posts, your reach to people can multiply in an unlimited way. Including a call to action is a great way for people to act on your message as well. Including a website link or adding a sentence to your post asking people to contact your transplant center will provide people with a way of collecting more information.

The information you post about your situation should be factual and honest, while still protecting your personal data. As I am sure you have heard, once you’ve posted it to the internet, it’s out there forever. You can delete information, but the digital footprint could be accessed for years to come. It’s important to protect yourself so no one can take advantage of your situation. When crafting your posts for the internet, ask your transplant center for advice on which information would be helpful to include.

Ask potential donors to contact your transplant center for more information and to ask questions.

People can be educated by reading the information above, but when they are ready to make this decision, they likely want expert advice. Most transplant centers that offer living donor transplant will have an Independent Living Donor Advocate. This person is not connected to the recipient’s care and is able to talk with donors and give them advice on how to make the decision to donate. They are completely dedicated to the donor’s well-being and will keep their situation confidential from the recipient’s team. This gives the donors someone to ask those difficult questions and get more information in a confidential manner.

Handle responses with grace and thankfulness.

Keep in mind that some people may say no or may not respond to your ask for a donor. Not everyone is ready to be a donor and their decision may have nothing to do with how they feel about you. They may have reasons they aren’t ready to share or it may not be the right time for them to donate. The transplant center may have turned them down, but they may not be ready to share those reasons why they were rejected. Try to keep your focus on finding someone to say yes, while keeping those who say no in mind for other future needs for your situation. When someone says yes to donation, accept their desire to donate and ask them to contact your transplant center for the next steps. You may not get information about their journey as a donor, but trust in the process and try to wait patiently for your team to contact you.

So much is involved in living donation from both a recipient and donor perspective. Once you are ready to embark on the process of finding a donor, let your transplant center know so they can assist you with any tools available. Don’t be afraid to ask questions. Asking for help isn’t a sign of weakness, it’s a sign of strength.

What is your tip to help others find a living donor?

HELPFUL LINKS

• Explore Mayo’s Transplant Center.
• Request an appointment.
• Connect with others in the transplant discussion group on Mayo Clinic Connect
• View our transplant toolkits on Mayo Clinic Connect