Over 100,000 people in America are waiting for an organ. Unfortunately, many may never get the call saying that an organ has become available. On average, 17 people die each day while waiting for a transplant. (Source: OPTN.)
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.
The decision to become a living donor requires time and careful consideration. Our hope is the information in this toolkit will help. 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 a living donor
- What to expect as a donor
- Financial information
- Peer and social support
- Getting started
Becoming a living donor
Before you decide to become a living donor, you should understand fully what donation involves. You may choose not be a donor at any time during the process. Your decision and reasons are kept confidential.
Living Donor Kidney Transplant
Most living kidney donors are a family member or friend. However, a donor does not need to be related to the person who receives the kidney. Some people who want to be kidney donors do not have a certain person in mind to receive the kidney. This is called a non-directed donation.
Often, non-directed donations start an “organ donation chain” where on average 15 kidneys are donated and received. In donation chains, the non-directed kidney donation goes to someone who had a donor lined up, but the donor was not a compatible match. That donor then “pays forward” their donation to someone else who is waiting.
Living Donor Liver Transplant
The liver is the only organ inside the body that can regenerate. Most living liver donors are a family member or friend, however, a donor does not need to be related to the person who receives the liver. Some people who want to be liver donors do not have a certain person in mind to receive the liver. This is called a non-directed donation. Even previous kidney donors can donate a portion of their liver.
Making the decision
Whatever your reason is for considering living donation, it’s important to understand the process and take time to make your decision.
To help you decide, you may want to reach out to family members, close friends, someone else who has considered donating an organ, a social worker or counselor. It may be helpful to ask yourself these questions:
- How do I feel about donating?
- Can I afford to take the time off work to rest and recover after surgery?
- Do I know enough about the process to make an educated decision?
- How may the donation change my relationship with the person I am donating to?
- Are there current health concerns that might keep me from donating?
- Do I have support from family members or close friends to help me through this process?
- How will I feel if it is determined I am not able to donate?
- Am I willing to take part in an organ donation chain if I’m not a match with the person I wanted to donate to?
- What if the organ that I donate doesn’t work well? How would I deal with that?
At Mayo Clinic, you will have an Independent Living Donor Advocate to help you determine if organ donation is the right choice for you. Another resource for you is Mayo Clinic Connect. In the transplant discussion group, you can meet people who are going through similar experiences and talk through your questions.
What to expect as a donor
You’ve made the decision to become a living organ donor, now what? You and the person you are donating to (your recipient), 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 donor.
Tests and screening
The first step to becoming a living donor is to have a blood test. This test helps determine if your blood type matches with the recipient. If your blood test results are acceptable, you then come to Mayo Clinic for tests and appointments to see if you can be a donor.
- A physical exam
- More blood tests
- Urine tests
- Kidney function tests
- Liver function tests
- Blood pressure tests
- Heart and lung function tests
- Tests to screen for cancer
- Other testing such as CT or MRI
While these tests are most commonly done, other tests may be done to help determine if donating is an option for you. More information about what to expect during your evaluation can be found on our blog.
At Mayo Clinic, a living donor kidney transplant is usually done using several small incisions instead of one larger one. This surgery is called laparoscopic surgery, which reduces the time needed to recover following surgery.
During a living-donor liver transplant, a surgeon places the part of your liver that is removed into the recipient after all of his or her liver is removed. It usually takes several weeks to several months for the liver to return to its normal size in both the recipient and the donor.
As with any surgery, 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 during your evaluation. Although there are risks involved, most donors do not have long-term problems after they donate.
It is common for people who have donated an organ to feel many emotions after surgery. You may feel worried, frustrated or angry. You might feel guilty or depressed if the person you donated to doesn't do well after surgery. These emotional responses are normal. Your donor team can help.
Liver donors usually stay in the hospital for four to seven days after surgery, while kidney donors typically stay two to three days. Most people can resume normal activity within six weeks and can return to work within six to eight weeks, depending on the type of work. Ask your donor team what you can expect with recovery and follow-up care.
More detail about the living donor process can be found on our blog.
FAQs or Commonly Asked Questions
Should I stop taking my medication(s) before the evaluation or the surgery?
You should not stop any prescription medication unless advised to do so by your physician. Tell your donor team about all prescription and over-the-counter medications you are currently taking.
What should I bring with me to the hospital?
Bring a basic toiletry bag for your use in the hospital, as well as comfortable, loose fitting clothes for when you are ready to go home. Because the hospital will already have your insurance information, there is no need to bring any documentation unless you are specifically asked. Leave all jewelry and other valuables at home. You can read more about preparing for surgery on our blog.
Should I stop smoking before my surgery?
Smoking slows healing. If you currently smoke, stop. This includes all tobacco products including chewing tobacco. If you are a current tobacco user, talk to your donor team about resources to help you quit.
Should I stop drinking alcohol?
It’s recommended to stop drinking alcohol before surgery. Don’t drink alcohol after the surgery until checking with your donor team. Your alcohol use, both current and previous, is discussed during evaluation.
It’s natural to be concerned about expenses related to your donation. The following information will give you a better sense of what to expect.
Lost work time
Before your donation, tell your employer about the surgery. Ask about disability insurance coverage, and possible paid time off.
Fortunately, 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 a kidney or part of your liver. Read more about the details of FMLA here, but essentially this means that living donors who are employees with FMLA have up to 12 weeks of unpaid, job-protected leave with their group health benefits maintained.
When returning to work, tell your employer about any restrictions or short-term special needs.
Donor and recipient costs
Most medical costs related to living donation are covered by the recipient’s insurance. Any medical issues found during your evaluation that are not related to the donation will need to be covered by your personal health insurance. For this reason, the transplant center may ask for your health insurance information before or during your evaluation. Future health problems may not be covered by the recipient’s insurance and life-long medical follow-up will become your financial responsibility.
Fundraising for donation
Some donors have chosen to raise funds for the activities of donation that are not typically covered by insurance. These can be expenses such as travel, lodging and food/necessities while you are at the transplant center for evaluation and surgery. Some patients utilize social media or crowd funding sites such as Facebook or GoFundMe. If you wish to use these sites, be sure you understand the costs and policies associated with them, as some have fees for their use. Ask your transplant center for assistance in crafting your wording to ensure that your message states the situation accurately. You can also contact the National Living Donor Assistance Center to apply for resources.
Peer and social support for living donors
Involving your family and friends
Your family and friends can make a difference before and after you donate. By keeping them involved in the donation process, you open yourself up to encouragement, support and a better emotional recovery.
Finding a support community
Sharing your concerns, fears, struggles, experiences and triumphs with other donors and recipients can be comforting. Support is available through a variety of ways, including one-on-one support, group gatherings, online communities and more. Consider joining our online support group at Mayo Clinic Connect. You can also ask your nurse coordinator or social worker for support resources.
Once you have educated yourself about living donation and decided to proceed, you can start the first step online with our living donor form. Visit our blog post or Mayo Clinic’s Transplant Center and learn even more about how to begin the donation process.