Finding a living donor when you need an organ transplant

Seeking a living organ donor can raise feelings of discomfort and even embarrassment in many transplant patients. The idea of asking a person to donate a part of their body can seem unimaginable; you may worry about feeling indebted to someone who says yes or concerned about the risk to them. But it’s important to realize that many more people say they’re willing to donate an organ than you might expect (one out of four people, according to the United Network for Organ Sharing). They want to help, and we encourage you to allow them to help.

1 out of 4 people say they are willing to donate an organ.

If you’ve decided to try finding a living donor, start by considering your different social connections as circles. Begin by contacting your inner circle (family and close friends), then move to the next bigger circle (such as your acquaintances from work, recreational sports league or religious institution), then lastly, everyone else through larger, more public campaigns.

Most importantly, don’t think of this as asking for an organ. Think of this as sharing your story. What often sparks someone to come forward as a donor is feeling a connection. Donors often tell us they felt they could relate to a patient’s story and in turn wanted to assist.

When sharing with others your need for an organ transplant, the following tips can be useful.

Find a champion: A donor champion is someone who knows you well and is vested in your health. Donor champions play a clutch role – they may not be able to donate, but they can help you find someone who can. That’s because it’s usually much easier for your champion to ask anyone on your behalf than it is for you. Champions should educate themselves about your health status, what’s involved with donation and be honest, accurate, open and respectful. Their goal is to share your story and information about the process of donation and then let people make their own decisions. An example of a champion starting a conversation could be:

Jasmine’s a great friend of mine. She has kidney failure and she’s on dialysis, and the doctor says a kidney transplant is her best chance of treatment. I know this is big ask, but I would be grateful if you’d consider being evaluated to donate...

The National Kidney Foundation also has a sample letter/social media post.

Get personal: Start with an email to close family and friends that explains what’s happening with your health. Describe your experience. Share that doctors have told you your best option is a living donor transplant, and some nonmedical details on how you hope it could change your life: Perhaps you’ll be able to spend more time with grandchildren, or get to travel. Include information about how the email recipient can contact your transplant team if they are interested in learning more. Assure them that potential donors are thoroughly evaluated by an independent medical team to ensure their safety.

Try different methods: Raise awareness by posting your story on social media, on your car windows and bumper stickers, reaching out to newspapers, radio stations, church bulletins and community flyers, and placing ads on community bulletin boards. The more exposure you have, the more likely you are to find a donor.

Ask for help: We’ve had patients request the Living Donor team look over their message before emailing or posting online to make sure they didn’t forget to include pertinent details. We have plenty of information to help educate you and potential donors about the transplantation process. The American Society of Transplantation and the American Transplant Foundation also offer in-depth advice on searching for a living donor.

Kidney or liver? Donating liver tissue is a more complex operation requiring a longer recovery period for the donor than donating a kidney. You should still use these same strategies to find a liver donor, while being aware and open about the complexity of the procedure.

Understanding Living Donor Liver Transplant

Video Transcript

[MUSIC PLAYING] In the United States, there are more than 14,000 people currently on the liver transplant waiting list. Living donor liver transplantation is an alternative solution for the long wait times for a deceased donor since a transplanted segment of the liver is able to regenerate or grow back within a few months. With one of the most experienced liver transplant programs in the Midwest, the University of Chicago Medicine offers patients a leading-edge approach to transplantation through living donor liver transplantation.

The ideal living donor is an individual between the age of 18 to 55 who isn't obese and hasn't had any major abdominal surgery. The donor's blood type must also be compatible with the recipient but not necessarily matching. Both donors and recipients will undergo blood work, a CT scan of the liver, which determines the shape of the liver and the blood vessel anatomy, and an EKG to rule out any potential heart conditions.

Once a donor has been deemed acceptable, the donor and recipient will meet with hepatologists and transplant surgeons to discuss the surgery. Patients who receive a liver from a living donor often have better short-term and long-term survival rates. Surgeries on the donor and recipient take place in separate but nearby operating rooms so the liver segment can be easily transported to the recipient.

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The medical and surgical teams are in constant communication during the surgeries. On the day of transplantation, surgeons will make an incision in the middle upper part of the donor's abdomen and will carefully isolate veins and divide the liver. The segment of the liver taken depends on the size of the donor's liver and the needs of the recipient. But typically, about 60% to 70% is taken. In a separate operating room, surgeons will make an incision under the rib cage and remove the recipient's entire diseased liver.

Once the recipient is ready to receive the liver, the donated portion is brought to the operating room and placed in the recipient's body. Blood vessels and bile ducts are then connected to their appropriate counterparts. The transplanted liver in the recipient and the portion left behind in the donor will regrow reaching normal liver volume and function within approximately six weeks.

Donors will typically stay in the hospital five to six days following surgery and may have to wait six to eight weeks to return to a job that requires physical activity. Recipients may be able to return home after one week in the hospital and will continue to recover for one to three months after surgery. Recipients will continue to work with our hospital team and will have annual follow-ups with their hepatologist.

UChicago Medicine also offers transplant patients a team of support staff, including social workers, pre and post-transplant coordinators, dietitians, and pharmacists. Our care team members will support you each step of the way. To learn more or to make an appointment for a liver transplant evaluation, visit uchicagomedicine.org/liver-transplant, or call 773-702-4500.

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Remember what is and isn’t legal: Donors may have lost wages, childcare, travel and lodging costs covered by programs like the National Living Donor Assistance Center and the American Living Organ Donor Fund. You cannot, however, pay someone to donate their organ.

Bring family to your clinic appointments: It’s a great chance for them to learn about the transplant process and gain confidence in your medical team. They can also learn about donation at these appointments and may consider it if they hadn’t before. This is a great chance for them to become your champions, too! Discuss your transplant plans with your family.

Don’t rule someone out: Your goal is to get potential donors to call your transplant team and ask to be evaluated. Let the transplant team determine if it's safe for them to donate.

John LaMattina, MD, is a transplant surgeon at the University of Chicago Medicine. Alexandra Grange, BSN, RN, is a living kidney donor nurse coordinator.