An Introduction for Donors and Recipients

An Introduction for Donors and Recipients

A successful liver transplant is life-saving for people with liver failure and there are thousands of people currently waiting to receive a liver transplant. Liver transplantation is a surgical procedure performed to remove a diseased or injured liver from one person and replace it with a whole or a portion of a healthy liver from another person, called the donor. Since the liver is the only organ in the body able to regenerate or grow back, a transplanted segment of a liver can grow to normal size within a few months.

Where do donated livers come from?

Livers for transplantation come from either a deceased or living donor. Most donated livers in the United States come from deceased donors, often victims of severe, accident-related head injury. Either they have arranged in advance to be an organ donor or their family grants permission for organ donation when the victim is declared brain dead.

A smaller number of transplants are performed using living donors, often relatives or friends of the recipient. The person interested in donating will undergo a comprehensive medical and psychological evaluation to make sure they are healthy enough to donate.

What is living donor liver transplantation?

During a living donor liver transplant, a portion of a healthy person’s liver (the donor) is removed and transplanted into another person (the recipient) to replace their unhealthy liver. Both the donor’s and recipient’s liver will regrow over the next few months. Receiving a living donor transplant reduces the amount of time a person needs to wait on the national transplant waiting list.

How does the transplant waiting list work?

Someone who needs a liver transplant is referred to a transplant center where they are evaluated by a team of specialists from a variety of fields. Once the person completes all required testing, the transplant committee reviews the information. If the committee determines the person is a suitable candidate to receive a transplant, their name is placed on the national transplant waiting list. This list is managed by the United Network for Organ Sharing (UNOS), which administers the Organ Procurement and Transplantation Network (OPTN), responsible for transplant organ distribution in the U.S. The organ allocation system ensures that organs from deceased donors go to the sickest people first.

When someone is put on the waiting list they’re assigned a priority score indicating how urgently they need a transplant. The score is calculated by their healthcare provider based on a specific formula. The two scoring systems are the MELD (Model for End-stage Liver Disease) used for adults, and the PELD (Pediatric End-stage Liver Disease), used for children less than 12 years of age.

MELD scores range from 6 to 40 and are based on whether or not the person is currently on dialysis and the results of the following four blood tests:

INR (internal normalized ration), an indicator of the liver making the proteins necessary for a person’s blood to clot
Creatinine, an indicator of kidney function
Bilirubin, an indicator of liver health
Sodium, an indicator of the body’s ability to regulate fluid balance

PELD scores range from negative numbers to 99 and are based on the:

Child’s age
Child’s degree of growth failure
Results of the following blood tests: INR, bilirubin, and albumin – a protein made by the liver which is usually below normal levels in people with liver disease

A higher MELD or PELD score indicates a more urgent need for a liver transplant. For example, people with liver cancer receive additional MELD points. While someone is on the waiting list, their score may go up if their condition worsens or down if it improves.

A small group of people who are critically ill with acute liver failure and likely to die within a week have the highest priority on the waiting list. More information about these scoring systems is available from UNOS.

How long does it take to receive a liver transplant?

It’s impossible to predict how long someone will have to wait to receive an organ from a deceased donor. While some people may wait for only a few days or weeks before an organ becomes available, others could face a much longer wait. Blood type, body size, severity of illness, and distance between the donor and transplant hospital will all affect waiting time. For patients who identify a living donor, time spent waiting for a transplant may be greatly reduced.

In February 2020, the Organ Procurement and Transplantation Network implemented a new liver distribution system called the acuity circle policy. This policy emphasizes the medical urgency of liver transplant candidates and the distance between the donor and transplant hospitals. Livers from all deceased donors will first be offered to the most urgent liver transplant candidates (Status 1A and 1B) listed at transplant hospitals within a radius of 500 nautical miles of the donor hospital. Following offers to the most urgent candidates, livers from adult donors will be offered to candidates at hospitals within distances of 150, 250 and 500 nautical miles of the donor hospital. These offers are grouped by medical urgency.

This new policy replaces the former system of donation service areas (DSAs) and regional boundaries across the U.S.

What are the benefits of a living donor liver transplant?

There are over 14,000 people in the U.S. wait-listed for a liver transplant. Every year, there are people who die or get removed from the waiting list because they’ve become too sick to undergo a transplant or their liver cancer becomes too advanced. Unfortunately, there are many more people waiting for a transplant than there are available organs.

Living donation reduces wait time – often by years – allowing someone to get this lifesaving operation when they need it. Living donor liver transplant:

Saves valuable time, reducing the risk of the recipient’s liver condition getting worse.
Typically results in quicker recovery time and improved long-term outcomes for the recipient because they’re receiving a portion of a healthy person’s liver.
Allows time for the donor, recipient, and caregivers to plan in advance of the operation.
Saves another life by allowing the next person on the waiting list to receive a deceased donor liver transplant.

Who can be a living donor?

A living donor must:

Be an adult 18 years or older
Be in good physical and mental health
Not be engaged in active drug or substance abuse
Have no history of certain health issues, such as:
- liver disease, including cirrhosis and hepatitis
- significant diseases involving other organs (lung, kidney, heart)
- uncontrolled high blood pressure
- active, malignant cancers
- certain infections, like HIV
Be able to understand the risks and benefits of living donation

If someone is interested in being a living donor, they must undergo a comprehensive pre-transplant evaluation to make sure they are a suitable candidate for donation. If, after undergoing a series of tests, the person is approved by the transplant team the final decision whether or not to donate rests entirely with the potential donor.

Do the donor and recipient have to be related?

No, the donor and recipient do not have to be blood relatives, but they must be determined to be medically compatible. When someone gives an organ to a specific person with whom they are medically compatible, it’s called a “directed donation.” In a directed donation, a donor may be:

A blood relative of the recipient, such as a parent, sister, brother, or adult child.
Someone close to the recipient, such as a spouse, friend, or co-worker.
Someone who the donor has heard about, but does not know personally.

If a person wants to donate an organ to help a stranger on the waiting list, it’s called a “non-directed donation.” A transplant hospital can match a non-directed donor with a compatible transplant candidate. Some non-directed donors would like to meet their transplant recipient; however, that can happen only if the donor and recipient both wish to meet.

Who pays for expenses associated with being a living donor?

A living donor’s medical expenses, including the pre-transplant evaluation, transplant surgery, and follow-up appointments, are typically covered by the recipient’s insurance.

Non-medical costs – such as travel, lodging, meals, childcare, and lost wages – are not covered. While it’s against the law to pay a living donor for an organ, these non-medical expenses may be covered by the transplant recipient. Charities may also be able to help. Work with the hospital’s transplant financial coordinator to learn more about what options exist relative to your specific circumstances.

A good resource for those seeking financial assistance with travel expenses is the National Living Donor Assistance Center (NLDAC). The NLDAC provides funding for donors and their caregivers for the evaluation, surgery, and medical follow-up trips. A donor’s eligibility for the program is based on the recipient’s household income. A summary of the program can be found here. Watch two helpful video resources from NLDAC:

Introduction to NLDAC

How to Apply to NLDAC

Are there other financial risks associated with being a living donor?

Living donation may have an impact on someone’s ability to obtain, maintain, or afford health, disability, life, or long-term care insurance. This happens if an insurance company considers a person to have a pre-existing condition after they donate. Federal law may protect living donors from problems with health insurance. It’s important for a potential donor to talk with the transplant center staff and their current insurance provider(s) to see if donating an organ could affect their coverage.

Potential donors who are employed also need to consider lost wages due to time off from work. They should check with their employer to see what benefits are available; these could include sick time, vacation time, and disability pay. Check to see if your employer is a member of the Living Donor Circle of Excellence. ALF is a proud partner of this initiative from the American Society of Transplantation (AST) which recognizes employers that support the lost wages of a living donor. Download a printable flyer for more information.

There are federal and state laws in place that make it easier to be a living donor by providing paid time off and tax credits for organ donation. The specific benefits available to a donor will depend on where they work and live. Talk with the transplant social worker to find out more information.

Related Links

There are many organizations where you can find additional information about liver disease, living donation, and organ transplantation. The United Network for Organ Sharing (UNOS) has a toll-free patient services line (1-888-894-6361) where patients, family, friends, or interested parties can call to discuss their questions and concerns.

In addition, the following organizations offer useful information on their websites:

Last updated on February 5th, 2024 at 02:45 pm