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Living donation is a wonderful act of generosity and courage. When someone donates an organ, it not only shortens the waiting time for the person receiving the organ, but reduces the pressure on the waiting list for others. Living donation gives hope to people waiting for a transplant. Our Arizona and Minnesota campuses perform more living donor liver transplants combined than any other medical center in the nation.

If you’ve been told you need a liver transplant, we’re here to provide you with all the details of this process, from finding a donor to recovering from your operation. If you have questions about the information provided here, please visit our Q&A tab or post a comment and we’ll get back to you as soon as we can.

• Becoming your own best advocate
• Finding a donor: where to look
• What to expect
• Financial information
• Peer and social support

If you’re currently in the process of trying to find a living donor, consider sending the donor toolkit to family and friends to educate them on the process.

Becoming your own best advocate

The first step in your transplant journey is to choose a transplant center. This webinar, "Transplant 101: Preparing for Your Journey," can help you navigate that process. When it comes to finding a living donor, it’s important you educate yourself and others about living organ donation. Here are some tips to get you started.

Educate yourself

Having knowledge about organ donation will give you the confidence to talk about your situation and answer questions about:

• The donor evaluation process
• Donor eligibility criteria
• Potential risks
• The advantages of living donation
• Financing elements of living donation
• Long-term medical and psychological outcomes for donors
• How to become a donor

Talk to your transplant team to be sure you have a complete and accurate understanding of how potential living donors are evaluated and selected.

You may also benefit from speaking to others who have already received a transplant. Connect with others in our transplant discussion group, or ask your transplant center if they have a list of patients willing to speak with you.

Educate others

Here are some tips that may be helpful when planning how to discuss your need for a living donor:

• Start by speaking to family and friends that are close to you. Healthy blood relatives, specifically siblings, tend to make the best donors.
• Be prepared with donor information and resources for family and friends. Your transplant team can also provide educational materials that would help them understand your situation and how they can help.
• Write a letter or email about your health. This allows potential donors private time to consider and discuss with their loved ones. Explain why your doctors recommend a transplant, and the benefits of living donation. Some of the benefits of living donation include reduced time waiting for an organ and better short- and long-term survival rates.
• If you're more comfortable in a face-to-face situation, host a group meeting for family and friends to educate a number of people at once about your situation. Before the meeting, write down what you want to say and practice with someone so you're comfortable sharing your story.
• Recruit advocates who can talk to people on your behalf about becoming a living donor. Advocates can be family members, friends, pastors and other important people in your life.

What to say

Here are some talking points to use while you talk with others about your illness and search for a living organ donor:

• According to my doctors, my organ (liver or kidney) is failing and I need a transplant.
• My best chance at getting a transplant is through a living organ donor.
• With living liver donation, a living person donates part of their liver to someone in need. The donor's liver regenerates and grows back to its full size in the weeks after the operation.
• The donor evaluation process takes several steps, beginning with a health history questionnaire. This is followed by blood tests and then a series of appointments at my transplant center.
• Living organ donation is a surgical procedure and there are risks that would be explained during the evaluation process. It's important you understand them in making your decision.
• Liver donors usually stay in the hospital for four to seven days after surgery.

Careful consideration takes time

• Don't expect potential donors to respond right away. Becoming a donor is a big decision and, while some people will make the decision quickly, others will need time to process the details involved with becoming a living donor. Assure them that you don’t need an answer that day. Give them space to think and not act on emotions alone.
• If anyone expresses interest in living donation, thank that person and tell him or her to contact the transplant center. At Mayo Clinic, they’ll have an Independent Living Donor Advocate to confidentially discuss their questions and concerns, and decide if living donation is the right choice for them. Once your donor has all of their questions answered and feels confident with their decision, the next step will be to fill out a health history questionnaire.
• Keep your options open. Someone may offer to donate when you least expect it.

Responding to your donor's answer

If a potential donor says no, respect their decision and thank them for considering. It's normal to feel let down, but try not to let their decision affect your relationship with them. If you're having a hard time moving on, talk to your social worker.

If your donor says yes, thank them and provide the health history questionnaire, as well as the contact information for your transplant center.

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Finding a donor: where to look

Family and friends

Because healthy blood relatives, specifically siblings, tend to make the best donors, it's recommended that your search for a living donor start with family. But the thought of asking someone to be a living donor can be overwhelming. For many people, thinking, "I need to let my loved ones know about my situation and educate them about organ donation" rather than "I need to ask someone to donate an organ” can have a significant impact on your state of mind and willingness to talk to family members and friends. Talk to your transplant team about resources they can provide to help you through this process.

At Mayo Clinic in Minnesota, our liver team has two programs to help liver recipients who are struggling to find a donor or those who have a donor who isn’t a good match for them. Sometimes, a donor may want to donate a partial liver to you, but they don't match. You and your donor can enter the Liver Paired Donation Program, which matches the donor with a different recipient in the program. The doctors will then find another patient whose donor doesn’t match them, and that person will donate to you. In the Living Liver Non-Directed Donation Program, the donor doesn't specify a recipient. That pool of donors may also be a possibility for patients whose donors are not a match for them.  You can learn more about these two programs on our website.

Social media

If you're unsuccessful in finding a blood relative or close friend who is willing and able to be your living donor, you may consider social media to raise awareness of your situation. Social media enables fast communication around the world, making it a great forum for sharing your story and need for a liver. A Facebook group page is an easy way to educate friends and family about your situation. Build one yourself or recruit the help of your caregiver.

When you post about your need for a transplant, include your blood type and the qualifications of living donation. As difficult as your situation may be, try to stick to the facts and avoid begging those in your social network to consider living donation. Here are some ideas of what to include in your posts on social media:

• The organ you need – and maybe some information about the liver and what it does for the body.
• The qualifications for living donation. Remember that the qualifications are general. If someone isn’t sure if they qualify, they should consider applying to be a donor to find out if they qualify.
• If you're comfortable sharing your diagnosis, educate your social network on your condition and why you need a transplant.
• If you're being treated at Mayo Clinic, include a link to our health history questionnaire, which is the first step to being considered for living donation.
• Photos of you, recent progress you’ve made and the hobbies you’re looking forward to returning to once you receive your transplant.
• Video blogs or live stream of you sharing your journey and personal transplant experience.

Don't forget these social media best practices:

• When people engage with your posts via likes, comments or shares, be sure to thank them. Answer any questions people ask and acknowledge well wishes.
• Aim to post at least 2-3 times per week to keep people interested.
• Add hashtags to your posts so that followers can easily find and search for updates they’re interested in following.

Remember that it’s important to protect yourself by taking some common-sense precautions:

• Discuss your idea to use social media with your transplant coordinator, who can help you develop a plan.
• Use caution when sharing sensitive information, such as personal phone numbers, addresses, email addresses or family information. Don't disclose anything about yourself that you wouldn’t want to be made public.
• Understand how social networking sites work and what privacy choices you have. There are no guarantees of privacy – anything can be cut, pasted and sent once it’s online.
• Be cautious about meeting cyber friends in person. It’s hard to judge people by photos or information they post online about themselves.

Your local community

Some transplant patients have success with outreach and events in their local community, such as at church, work, school or through civic groups. Think about people in your community that are well-connected. Invite them to brainstorm ideas with you on how you can tell your story.

News media

Not only does social media provide exposure, but human-interest stories in the local news media are another effective way to share your story and promote your need. Start by reaching out to local newspapers, TV stations, and radio stations about community events and donation efforts.

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What to expect once you’ve found a donor

When you find a donor, both you and your donor will have a variety of appointments and tests to make sure you are a good match, and to prepare for the transplant.

Mayo Clinic is taking precautions to provide safe care based on each patients specific needs in regards to COVID-19. Click here to get the most up to date information. During your transplant evaluation, your care team will discuss how these precautions will impact you as a recipient.

Tests and screening

Your health screenings will determine if you and your donor are a good match. You must be strong enough to receive a transplant, and your donor must be in good shape to undergo surgery. As part of your evaluation for transplant, you will receive a complete physical exam, including x-rays, blood tests and urine tests. Your physician may recommend additional tests to determine your readiness for surgery.

The procedure

Mayo Clinic surgeons use a laparoscopic surgery technique using several small incisions instead of one larger one to remove the donor’s liver. This technique reduces the time needed for your donor to recover following surgery.

During a living-donor liver transplant, surgeons remove your entire liver and replace it with a portion of the donor's liver. It usually takes several weeks to several months for the liver to return to its normal size in both the recipient and the donor. While the recipient's surgery is an open surgery with a larger incision, the donor's surgery is able to be performed with laparoscopic assistance to keep the incisions smaller and their recovery time shorter. Learn more about preparing for surgery, including tips on what to pack in your hospital bag.

Risks

As with any operation, there are risks involved. Some of the risks of this surgery are the same as any surgery: infection, bleeding and blood clots. Rare complications from surgery include heart attack, stroke and death. Your team will discuss risks with you in detail.

Recovery

Recovery for a liver transplant varies. Most patients should not lift more than 10 pounds or do any push/pull motions with your upper body such as vacuuming or shoveling for up to six weeks after surgery.

Often we think of the physical changes patients experience after transplant, but transplant patients also undergo significant emotional and psychological transitions following transplant. To better understand what transplant patients can expect, visit our blog from Dr. Sheila Jowsey-Gregoire regarding post transplant mental health and wellness.

Liver patients come back to Mayo Clinic for follow-up care several times a week for the first few weeks after surgery, and again after four months. You may also be asked to have your local lab perform blood work to be sent to Mayo Clinic so that we can monitor your status. After your four-month visit, you will be asked to return every year for an annual evaluation. Learn more about post-transplant care.

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Financial Information

It’s natural to be concerned about the financial aspects of receiving a transplant, but the following information will give you a better sense of what is generally covered by health insurance and how to get assistance, if needed.

Insurance coverage

The good news is that your insurance should cover the medical costs associated with your transplant. However, insurance may not cover travel, lodging, lost wages and other non-medical costs. After your procedure, you may be entitled to disability pay if you have disability coverage through your employer or another source.

Returning to work

Before your transplant, inform your employer about the surgery and when your medical team expects you will be able to return to work. Ask about disability insurance coverage and possible paid time off. When returning to work, make your employer aware of any physical restrictions or short-term special needs. It’s very important that you follow the recommendations of your care team regarding work activities.

Donor and recipient costs

Most medical costs associated with living donation are covered by the recipient’s insurance. Talk to your insurance provider to get all the details your donor will need. Mayo Clinic has a financial team dedicated to helping transplant recipients and donors navigate this process.

Also, in August 2018, the U.S. Department of Labor issued an opinion letter stating a healthy organ donor can use medical leave through the Family and Medical Leave Act (FMLA), to donate part of your liver. Read more about the details of FMLA here, but essentially this means that if you have a living donor with FMLA, they will have up to 12 weeks of unpaid, job-protected leave with their group health benefits maintained.

Support and resources

Many patients cannot afford to pay for the full cost of a transplant procedure, or even an insurance deductible, using personal funds. Fortunately, several options are available to provide financial support for transplant patients and their families. Learn more about Mayo Clinic charity care.

Also, UNOS's Transplant Living program maintains a list of organizations that provide financial assistance. Learn more.

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Multi-organ transplant

Mayo Clinic doctors and surgeons have experience evaluating and treating people with complex conditions who may need multiorgan transplants. For liver transplant specifically, Mayo Clinic has the following options for multiorgan transplant: heart-liver, heart-lung-liver and liver-kidney. Your care team will discuss with you the best option treatment option for your condition. Learn more about multiorgan transplants at Mayo Clinic.

Peer and social support

Involving your family and friends

Family and friends can provide support and comfort before, during and after the transplant process. They can help locate and contact resources when searching for a donor and care for you after your surgery. By keeping them involved in the transplant process, you open yourself up to encouragement, support and a better emotional recovery.

Having a dedicated caregiver is required for transplant. This can be a spouse, parent, sibling or friend. You may have more than one caregiver during your transplant journey. Committed caregivers play a big part in a successful transplant. Your caregivers need to be in good physical and emotional health and should be able to get you to and from your appointments, help with medications, and help with daily routines. Here’s a great Q&A with Steve Vorseth, a Licensed Master Social Worker in the transplant center at Mayo Clinic’s campus in Phoenix, covering the vital role the caregiver plays before and after transplant surgery.

Finding a support group

Sharing your concerns, fears, struggles, experiences and triumphs with loved ones, as well as fellow recipients and donors can be comforting. Support is available through a variety of venues. You can find others here who have walked in your shoes, or talk to your social worker about finding a support group in your area that meets in person. Connecting with others in the transplant community can help you make lifelong friends and find opportunities to promote the need for organ donation.

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