Deciding to have major surgery is never easy. So imagine how tough the decision might be if the surgery meant giving up a piece of the largest organ in your body, entirely for the benefit of another person—someone whose life might well be saved by your generosity.
The quandary is real for increasing numbers of Americans. That’s because doctors are urging more and more people in need of liver transplants to seek out living donors, just as many kidney transplant patients have done for years.
Faced with uncertain odds of getting a timely transplant the old-fashioned way—by waiting for an organ from a deceased donor— patients whose livers are failing due to life-threatening conditions, such as cirrhosis, viral hepatitis and primary liver cancer, are reaching out to family, friends, faith communities and sometimes even strangers on social media.
What’s at stake: About 14,000 Americans each year need a new liver, but only about 8,200 get one. Many remaining patients become too ill to qualify for a transplant or die waiting.
Living donation is possible because the liver is the only human organ that can regenerate. That means the person who gives up part of his/her healthy liver will have most of the organ’s original size again within two months—and so will the recipient.
The procedure, developed over the past three decades, has continued to evolve over the years and now offers improved surgical techniques and postoperative care. As a result, living liver donations work at least as well as a transplant from a deceased donor with one-year survival often exceeding 90%. And it often means patients get their transplants at earlier stages in their illnesses. But that does not mean the decision to donate is simple.
Most transplant centers will accept donors between the ages of 18 and 55 or 60. Older adults have increased surgical risks, and younger people are not considered mature enough to give informed consent.
Most living liver donations are “directed”—meaning you offer to donate to a particular patient who has reached out for potential donors among family, friends or strangers. The baseline for consideration is whether you have a blood type that matches or is compatible with the blood type of the patient.
If you think you’d like to be considered as a living liver donor, you can start the process by calling the patient’s transplant center. During the initial phone call, a staff member will ask a few questions about your overall health and your reasons for considering donation. If you and the transplant team agree that you might be a good candidate, you will go to the transplant center for a couple of days of tests and interviews.
You can expect a thorough examination of your physical health, including blood draws…tests of your heart and lungs…scans of your liver …and a psychological evaluation to ensure that you understand the risks and that there has been no coercion to participate in a living liver donation. Some people, including those who are significantly overweight and at risk for fatty liver disease, may be asked to undergo a liver biopsy.
If you have certain health problems, including bleeding or clotting disorders or a history of alcoholism or drug addiction, you won’t be able to donate. But some common conditions, such as mild high blood pressure that is well-controlled with medication, will not disqualify you.
If the transplant team believes you are a good candidate, a separate donor advocate team, including a physician, social worker, bioethicist, coordinator and psychiatrist, will review the decision with your interests in mind.
Important:If you are accepted, you can change your mind at any point. The final decision is always yours.
If you are accepted and decide to donate, you usually will have a few weeks to get ready—though in some cases, a patient is in such desperate need that surgery is scheduled within a couple of days. If you do have a waiting period, the transplant team will encourage you to limit or avoid alcohol, which is hard on the liver…eat a healthful diet…and avoid putting on weight, which can lead to fat buildup in the liver.
You also will want to use this time to talk to your family and, if need be, your employer about the support you will need after the surgery.
You and the recipient will show up for surgery on the same day, in adjoining operating rooms. You will be put under general anesthesia, so you won’t feel any pain. During an operation that can last about six hours, surgeons will remove a portion of your liver—15% to 70% of the volume, depending on the needs of the recipient. Children need the smallest amount of tissue.
At some transplant centers, all donor surgeries are done with a large abdominal incision, shaped like a hockey stick that extends across half the belly and up the chest. Elsewhere, some surgeries are now done with smaller laparoscopic incisions, reducing postsurgical pain and recovery time.
The donor faces a risk for death of about one in 500, according to the best available data. That’s comparable to the risk faced by anyone having major abdominal surgery. Other risks include wound infection, hernias, excess bleeding and leakage of bile, a digestive fluid made by the liver. A leak can temporarily cause pain, nausea and vomiting. The rate for a major complication, such as a bile leak, incisional hernia or liver failure, varies by transplant center, but typically is below 10%.
Most donors need to stay in the hospital for five to six days after the surgery, but you may be able to leave sooner after a laparoscopic procedure. If you live far from the transplant center, you may be asked to stay nearby for another week or two to be monitored by your caregiver for fever, shortness of breath or other symptoms that might indicate a complication. Recovery can take time due to the fatigue and pain caused by a large incision, which is commonly used. If you have a desk job, you may be able to return to work in two months or less…someone with a physically demanding job might need three months after conventional surgery.
While no long-term health risks have been found, you will be asked to return to the transplant center for periodic checkups and to continue yearly physicals with your primary care physician at home.
The recipient’s insurance will cover the cost of your surgery and medical care related to any complications from the donation, but not the cost of travel, lodging and time off from work. You should talk with your employer to determine whether your time off can be covered by vacation, sick time or disability pay.
Help with travel, lodging and meals away from home is available to some donors through certain charities or the National Living Donor Assistance Center (888-870-5002 or Living DonorAssistance.org). While a donor cannot benefit financially from the donation, the recipient and his/her family may be able to help you with some related expenses as well. A transplant center social worker will walk you through the help that is available.
