A Donor’s Guide to Living-Donor Liver Transplant
Living organ donors allow thousands of patients to receive life-saving transplants every year. They give the gift of life to transplant candidates who may become too sick for a transplant or even die while waiting for an organ from a deceased donor. To reduce time spent on the waiting list, family, friends, co-workers, and even strangers offer to be living organ donors. There is much to learn before deciding whether donating an organ is right for you.
What follows is a general outline of the living-donor liver transplant process. To get more information specific to your circumstances, work with the hospital’s living donor liver transplant team; they are there to educate and support you every step of the way.
The decision to donate or not, and the reasons for your decision, is yours to make. You should never be pressured by anyone to donate. Ultimately, YOU are the only person who can make this decision.
By being a living donor, you have the opportunity to give someone a second chance at life. Not only will you change the course of the recipient’s life, but the course of their loved ones’ lives as well. While the benefits of living donation are many, there are also risks to consider before making the decision to donate.
Every surgery has risks. Some of the potential risks of any surgery, including organ donation, are the following:
- Allergic reaction to anesthesia
- Injury to tissue or other organs
- Blood clots
- Death (in rare cases)
Some of the potential risks specific to liver donation include:
- Bile leakage: This happens in a small subset of donors and usually resolves itself. Doctors can help fix the problem by temporarily placing a tube in the liver.
- Wound infections: This is when an infection occurs at the site of surgery. Should this happen, doctors will treat and monitor the infection.
- Intestinal problems: These can include blockages and leaks from the intestines.
- Organ damage/failure: Depending on the severity of the damage, certain treatments or a possible transplant could be required.
The best place to learn about these risks is from your transplant hospital staff. Talk with them about how likely these risks are to happen, how serious they are, and how they would be treated.
Regarding the long-term implications of living organ donation, the lifetime risks to someone’s health are considered to be low for those determined to be healthy enough to donate.
To start the process of becoming a living donor, you’ll need to contact a transplant hospital. If you want to donate to someone you know – such as a family member or friend – ask that person to put you in touch with their transplant hospital. If you’d prefer to get tested before telling your family member or friend, discuss this with the transplant staff.
If you want to donate to someone you do not know, call a transplant hospital near you to discuss it.
The decision to donate an organ is a serious one. If you and the transplant hospital staff agree that it makes sense for you to be evaluated, they’ll put you in touch with an independent living donor advocate.
The job of an independent living donor advocate is to educate and support you during each step of the donation process. The advocate will make sure you have all the information you need to make a fully-informed decision. In order for the advocate to be most helpful, it’s important that you share all your concerns, fears, and questions with him or her. Friends and family can help:
- Remember everything you need to know.
- Think of questions to ask.
- Support you through this process.
The advocate will not share your medical or other information with the transplant candidate. The living donor advocate is there solely to protect you and your best interests, including helping you walk away if you decide that living donation is not right for you.
If you and the transplant staff both decide to move forward, you’ll begin a comprehensive evaluation process. In addition to the independent living donor advocate, the transplant team usually consists of the following members:
- transplant surgeon
- transplant coordinator
- social worker
- financial coordinator
The entire team will be involved in the evaluation process. This process can take a few days and will include assessment of your:
- body’s overall health
- liver health
- mental and emotional health
- support system
- financial situation
The purpose of the evaluation process is to make sure you are healthy enough to donate, and that donation is safe and right for you. In addition, the information gathered will be used to assess the likelihood of an optimal outcome for the recipient.
The living donor evaluation includes the following types of tests:
- Physical exam
- Medical history: You’ll be asked for a detailed medical history, so it’s a good idea to bring copies of previous medical records or tests if you have them.
- Psychological and social evaluation: Transplant team members will ask you many questions about your life, such as:
- Why do you want to donate?
- How will donating affect your life? Your family? Your job? Your finances?
- Who will help you during recovery?
- Do you have any mental health issues that could be made worse by donating?
- Do you have any risky habits?
- How do you think you’ll feel after donating?
- Do you feel pressure from anyone to donate?
- Diagnostic tests: These will include an electrocardiogram (EKG) and chest x-ray, to make sure your heart and lungs are healthy enough for you to undergo surgery. If necessary, diagnostic tests of other organs might be included as well.
- Imaging tests of your liver: Specialized images – or pictures – help the transplant team assess the health and size of your liver. These tests can include a CT scan, MRI, or ultrasound.
- Blood tests: Some blood tests are used to evaluate your health, assessing things such as your liver and kidney function. Some are taken to see if you have any infections or conditions that could be transmitted – or spread – to the transplant recipient. Other blood tests help the staff determine whether you are medically compatible with the transplant recipient; these include:
- Blood type: Blood types are categorized into the following four groups: A, B, AB, and O. Most transplant centers require the living donor and transplant recipient have compatible blood types. Although not common, there are a few transplant hospitals that can now perform transplants between people who, in the past, were not considered a match due to incompatible blood types.
- Tissue-typing: This test checks the tissue match between you and the transplant recipient. Even if you don’t match, the recipient can still have a successful transplant because of immunosuppression medications.
- Cross-matching: This test checks for factors that influence organ rejection by the transplant recipient.
The percentage of your liver that is removed will depend upon the age and size of the person receiving the transplant. If you donate to an adult, about 50 to 60 percent – or a little over half of your liver – will be removed. If you donate to a child, about 25 percent – or a quarter of your liver – will be removed. The liver regenerates, or grows back, to full size for both you and the recipient in approximately two to three months.
It’s important to maintain a healthy lifestyle prior to surgery to ensure you’re in good health the day of the procedure. Eat well, exercise regularly, get enough sleep, don’t drink or smoke, and avoid people who have a contagious illness, like a cold or the flu.
Donors are asked to stop the following activities at least one month prior to surgery:
- Smoking: If you’re a light smoker, stop smoking a month or more prior to surgery. (People who are heavy smokers do not make ideal organ donors; they have an increased risk of heart and lung complications with any surgery).
- Oral contraceptives: Donors should stop taking birth control pills about four weeks prior to surgery to lessen the risk of blood clots following the procedure. You should use other forms of birth control during this time.
- Alcohol and drugs: Prior to surgery, you must be sober of alcohol and drugs. Depending on the drug, a longer period of sobriety may be required.
The Living Donor coordinator will give you more detailed instructions on exactly what you need to do in the days leading up to surgery.
Once you have a date for surgery, you should finalize your plans with family, friends and others who will serve as caregivers – whether for you, your children, other dependent adults, or pets. It’s also helpful to identify a person who can keep friends and family informed about your progress post-surgery, relieving you and your primary caretaker of this task.
If employed, give your employer notice of when you’ll be starting your medical leave and the estimated date you’ll return to work.
During living-donor transplant surgery, you and the recipient are placed in nearby operating rooms. Each of you has your own dedicated transplant team. Once you’re under general anesthesia, the surgeon makes an abdominal incision to remove the portion of your liver that’s needed, based on the size of the recipient. After your surgery begins, another team of surgeons starts to operate on the transplant recipient, removing their entire diseased or injured liver and replacing it with the donated portion of your healthy liver.
Several tubes will be placed in your body to help it carry out certain functions during the operation and up to a few days afterward. These include a breathing tube, intravenous lines to provide fluids and medications, a catheter to drain urine from your bladder, and other tubes that allow fluids to drain from your abdomen during the postoperative healing period. The entire liver donor operation takes about five to seven hours.
Following living-donor liver surgery, you’ll stay in the hospital approximately one week. Once you go home, you’ll need time to recuperate and help from family and friends before getting back to your normal activities. While recovery times vary, most living donors can:
- Shower and dress themselves upon returning home.
- Drive a car in about two to four weeks.
- Get back to most pre-donation activities in about eight weeks.
- Return to work within eight weeks. However, if your job is physically demanding – requiring heavy lifting, bending, or stretching – you may need to take up to twelve weeks off from work.
Every person recovers from surgery at a different pace. Some donors get back to their lives quickly, while others feel tired for quite some time after donation. Since it’s impossible to predict how you are going to feel, it’s important to plan for people to be available to you for as long as necessary.
While you’re in the hospital you’ll receive some routine postoperative medications, along with medicine to manage your pain. You may need medication after leaving the hospital for a limited time. There are no special medicines that need to be taken long-term after donation.
When you’re ready to go home, you’ll receive very specific discharge instructions from your transplant team. It’s important that you and your caregiver understand these instructions. If something is confusing to you, do not hesitate to ask questions.
Transplant staff will follow you for two years after surgery to monitor your health. The exact timing of your initial postoperative visits will depend on the transplant center’s protocol. All living donors require certain tests at six, twelve, and twenty-four months after surgery. If you don’t live near the transplant center, you may be able to do some of these tests at a local lab and/or follow-up visits at your own doctor’s office.
It’s very important to commit to the required follow-up visits after donation. Checks-ups help the transplant team make sure your recovery is going smoothly. These visits give you a chance to ask questions, express any concerns you may have, and keep you on track to be as healthy as possible.
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