A Recipient’s Guide to Living-Donor Liver Transplant
If you have liver disease, a time may come when your doctor tells you that you need a transplant. A liver transplant is recommended when a person’s liver no longer functions adequately enough to keep them alive. A successful liver transplant is a life-saving procedure for people with liver failure. Learn all about liver transplantation here from the pre-transplant evaluation to the transplant surgery and recovery period. Living-donor liver transplant is one option for transplantation.
Once you’ve been approved as a transplant candidate, your name is placed on the national transplant waiting list. This list is managed by the United Network for Organ Sharing (UNOS). The organ allocation system ensures that organs from deceased donors go to the sickest people first. There are thousands of people on the waiting list for a liver. Unfortunately, many people on the list won’t receive a transplant in time because there aren’t enough deceased donor livers available. But there is another option: living donation. During a living-donor liver transplant a portion of the liver from a healthy donor is removed and transplanted into the recipient. These transplants are possible because of the liver’s unique ability to regenerate, or regrow.
Living-donor liver transplant is an alternative to waiting on the transplant list. The benefits of living donation are many; it can:
- Save you valuable time, reducing the risk of your liver condition getting worse.
- Result in potentially quicker recovery time and improved long-term outcomes because you’re receiving a portion of a healthy person’s liver.
- Give you more options about where and when the transplant happens.
- Allow time for you and your caregivers to plan in advance of the operation.
Living-donor liver transplantation is an important option. Talk to your transplant center staff about this during your first visit. It’s essential to have this conversation early on. Finding a potential donor and making sure they are medically compatible with you is a process that takes time. Your transplant team will guide you through this journey, providing you with support, information, and resources every step of the way.
Hearing that you need a liver transplant can be very overwhelming. There’s a lot to learn and do when becoming a transplant candidate. It can all feel like it’s just too much, particularly when you’re not feeling well. Asking someone to be a living donor can be a challenge, but the process can be made easier when you don’t try to do it alone. Everyone needs a support team! Start by enlisting the help of family and friends.
Find a Living Donor Champion
A living donor champion is a family member, friend, co-worker, or anyone else who is willing to take the lead in helping you find a living donor. This is one of the most crucial members of your support team, allowing you to focus on staying as healthy as possible. A living donor champion’s role includes:
- Learning how to talk about living donation and transplant
- Helping you identify and expand your social network
- Getting your story out to as many people as possible
- Sharing your story safely and legally
- Offering you support and inspiration as you go through this challenging process
When trying to identify a champion, consider people who are outgoing, optimistic, dependable, and willing to learn new things.
Being a champion involves a substantial commitment of time and energy. Despite that, people that have served as someone’s champion talk about the positive impact it has had on their own lives – in addition to the life they’re helping to save.
Learn about the living-donor liver transplantation process
Getting educated is the next step. Your transplant center is one of the best places for you and your support team to learn about living donation. Being able to answer questions that potential donors might have will help you and your champion get comfortable talking about your need for an organ donor.
People who are considering being a living donor typically want to know:
- The risks and benefits of living-donor liver transplant.
- The tests that are involved in the screening process.
- What happens during the transplantation surgery.
- How long it takes to recover.
- Who pays for the expenses associated with donating.
- How this might affect their employment, finances, and personal life.
Answers to these frequently asked questions can be found in the American Liver Foundation’s Donor’s Guide to Living-Donor Liver Transplant.
You can also find a lot of information about living organ donation on the internet. Here is a list of organizations that provide trustworthy information on their websites.
In addition to talking with transplant staff, your center may be able to connect you with people who have looked for a living donor, been a living donor, or been the recipient of a living-donor liver transplant. Some living organ donors and transplant recipients have shared their stories with the United Network for Organ Sharing (UNOS), the organization that manages the national transplant waiting list. You can read their “Stories of Hope” here. Discussing your need for an organ donor can be highly emotional. Hearing the experience of others can help you feel more at ease about having this conversation.
Get your story out
To find a living donor, you need to share your story far and wide. This is the main task of your champion. It’s a good idea to start by sharing your story with the people you both feel most comfortable talking to. From there, think about expanding your circle to include people:
- at work
- in your neighborhood
- at a gym or fitness center
- in your alumni network
- at your place of worship
- in a club (book clubs, sports leagues, church groups)
Using email is an easy way to reach individuals you know. Your champion can create a specific email address that relates to your story (for example: FindPeterALiver@_____.com). This is eye-catching to those receiving it, and helps keep your and your champion’s personal email account private.
One of the most effective strategies to widen your search for a living donor is sharing your story on social media. Just one message can have endless reach, with your connections sharing the message with their connections and so on. Social media lets you share your story quickly, efficiently, and at no cost. The most popular and effective social media platform for this type of request is Facebook. For detailed instructions on how to set-up a Facebook profile, click here.
When someone tells you they might want to donate, they are really stepping forward to learn more about living donation. The potential donor needs to contact your transplant center, where he or she will:
- Be assigned their own living-donor liver transplant team.
- Talk with members of their team to become fully informed about the donation and transplant process.
- Decide, in collaboration with the team, if it makes sense to move forward with testing or if it’s not the right decision for any reason.
- Begin the evaluation process, if both the potential donor and transplant team agrees.
- Complete all required tests. During this time, the transplant center will not give you any information about the donor or test results, unless the donor asks the center to let you know. This is to protect the potential donor’s privacy.
- Find out if he or she is approved by the transplant team.
- Discuss his or her feelings with the team about moving forward with donation. The final decision is completely up to the donor and no one else.
- Undergo transplantation surgery and recovery, if that is his or her final decision. Keep in mind, the potential donor has the right to continually evaluate their decision to move forward all the way until the day of donation.
Finding a living donor is a journey that can have many ups and downs. Someone might volunteer to be your donor right away, only to find they are not an acceptable candidate because of medical, social, or other reasons. Or, the right donor may come forward only after many months of hard work by your champion, friends, and family spreading the word. It’s normal to feel discouraged from time to time. Talk about your feelings with someone on your support team, and then carry on and continue to share your story. A transplant requires just one suitable donor, and you never know when the right person might step forward.
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