Services > Transplantation > LLUMC&CH Adult / Pediatric Liver Transplant FAQs

Frequently asked questions for patients

Q: Whom do I contact at Loma Linda for a liver transplant evaluation?

A: If you have a serious liver disease and your primary care doctor or your gastroenterologist tells you to be evaluated for a transplant, he or she may refer you to the Loma Linda University Transplantation Institute at Loma Linda University Medical Center.

You will need to be evaluated here by a hepatologist, a specialist in liver problems. Call the Transplantation Institute toll free at 1-800-LIVER90. You can also call (909) 558-4252.

Our intake coordinator will set up an appointment for you to see the Loma Linda Transplant hepatologist. They will ask you about your insurance coverage and it will be reviewed to see if it will pay for the evaluation tests. Sometimes a test may need to be done through your primary doctor due to your particular insurance coverage.

We will ask that copies of your recent medical tests and clinic notes be faxed to use prior to the visit with the hepatologist. You may be asked to bring x-rays or biopsy slides to the visit.

If the hepatologist believes that a liver transplant would improve your health, he or she will ask you to undergo a transplant evaluation to see if you would be a good candidate for a new liver. At that time you will meet your liver transplant coordinator and a schedule of testing will be developed for you.

Q: What is the United Network for Organ Sharing (UNOS)?

A: The United Network for Organ Sharing (UNOS) is contracted by the Federal government to maintain the national transplant list. They also gather data to monitor national survival rates of transplantation and to ensure a fair, medically sound and scientific organ distribution system. They provide public education on all aspects of transplantation and develop policies under which transplant programs must operate. For more information you can visit www.unos.org

Q: What is the purpose of a liver transplant evaluation?

A: The purpose of the transplant evaluation is to:

  • Examine your current physical condition.
  • Determine possible treatment options for you.
  • Find out if you are a good candidate for a transplant.
  • Give you and your family information on transplant surgery including how serious it is and to allow you and your family to make an informed decision about the surgery.

Q: When a liver is available who gets it?

A: When a liver becomes available in our local region (organ procurement organization area), there are at least three factors that are taken into consideration. These factors are: blood type (O, A, B, AB) matching; body size; MELD score.

Q: Where do organs for transplant come from?

A: Organs for transplant come from people who have been tragically killed in an accident or from a medical brain injury. For example, a car accident, gunshot wound, a fall, a stroke or some other incident that has caused injury to the brain. The organ donor is pronounced brain dead while on life support and the family is asked to consider organ donation. Once the family decides on organ donation, the UNOS list is reviewed and a recipient is chosen. The transplant center is notified that a liver is available and the patient is then notified. The donor is usually about the same weight and body size as the recipient, free from infection or injury that affects the liver and of the same blood type.

The transplant surgery may be cancelled if you have an active infection or the donor liver shows signs of deterioration or poor function. This is a temporary setback. The search for a new liver will continue.

The transplant surgery may be cancelled if you have an active infection or the donor liver shows signs of deterioration or poor function. This is a temporary setback. The search for a new liver will continue.

Q: How will I be notified that a liver is available?

A: You will be either notified at home or you may be in the hospital because your disease has become worse. If you are not already in the hospital, you must come immediately to the hospital. You must be available around the clock whether you are at home, school, at work, or on vacation.

It is very important that you make sure your transplant coordinator has your correct phone numbers and the phone number of close relatives so that you can be reached if a liver is available for you.

Planning for the call:

  • Plan ahead to pack any last minute items and arrange for someone to take care of your children, house, mail, and animals.
  • Plan who will be available to bring you to the hospital.
  • Identify who will care for you if you become very ill before and remain ill after your transplant.
  • If you do not live within an hour from the hospital, check on where you and your caregiver can stay.
  • Bring a list of your medications, your insurance information, and identification (a driver's license).

When you are called you will be given a time frame of when the surgery will occur. This is unpredictable. You will be asked to stop eating, drinking, and taking your medications. Sometimes surgery is cancelled at the last moment if the donor liver is not good for you or if you have an infection or have developed any other medial problem that would interfere with surgery or your recovery.

Q: If I have a serious liver disease as well as HIV/AIDS, can I be considered for a liver transplant?

A: People with HIV/AIDS are not eligible for transplants at Loma Linda Transplantation Institute.

However, there are centers that perform transplants for HIV/AIDS patients. Some of the centers include the University of Pittsburgh Medial Center, Mount Sinai Hospital in New York City, Cedars-Sinai Hospital in Los Angeles, The Medical Center at the University of California at San Francisco, and Jackson Memorial Hospital/University of Miami in Florida.

This list is not complete and does not constitute a recommendation.

Q: If I have been a substance abuser (alcohol or drugs) in the past, can I be considered for a transplant?

A: If you have abstained and are clean for six months you can be considered for transplant. You will need to have written documentation of this fact, and most insurance companies will also require six months of documentation. You may be required to continue to attend Alcoholics Anonymous or Narcotics Anonymous meetings on a regular basis and be monitored through random urine or blood drug screens.

If you are approved for a transplant you will continue to be monitored through random checks to be sure you are not using again.

Q: How long does it take to be evaluated for a liver transplant?

A: At your first clinic visit at Loma Linda you will be examined by a hepatologist, a liver specialist. Depending upon your medical condition, the hepatologist may refer you for a transplant evaluation. The transplant team will then set up an evaluation schedule for you.

The evaluation takes about one to two months depending on your particular insurance. Your coordinator and coordinator assistant will attempt to group your appointments so that your travel time is minimized. Bring some reading material or quiet work you can do while you wait for your evaluation tests.

One area the evaluation team will review is your insurance coverage. Once your are referred for a transplantation, evaluation information will be sent to your insurance company for authorization to cover the transplant and other health issues that may come up.

If you are a substance abuser, or have been, the team will need documentation of at least six months sobriety or abstinence before you can qualify for the liver transplant waiting list. You will also be subject to random screening.

Q: What physical tests will I go through during the evaluation?

A: There are many tests. You may have special tests depending on your medical condition, but these are some of the basic tests you will have during evaluation.

  • Blood tests
  • Abdominal CT or MRI scans
  • Chest x-ray
  • Pulmonary (lung) function tests
  • ECG
  • Echocardiogram
  • Dobutamine stress test
  • You will also have appointments with the social worker, surgeon, anesthesiologist, and financial coordinator.

Q: What symptoms should I look for while I wait for a transplant?

A: Liver disease is a progressive condition. You and your family/caregiver need to be aware of changes in your body as the disease progresses. Not all patients have the same problems. Many of the problems can be managed medically, but you need to talk with your coordinator/physician when these changes occur.

Here are some things to watch for and notify your coordinator or physician about:

  • Yellow color of eyes and skin
  • Dark urine (the color of tea or cola)
  • Grey, light, or white stools
  • Nausea, vomiting, loss of appetite
  • Weight gain and abdominal swelling
  • Unusual weight loss
  • Nosebleeds, bleeding gums
  • Itching
  • Sleep disturbances
  • Exhaustion, tiredness
  • Vomiting blood (may look like coffee grounds or be bright red) - For this call 911 and go to the nearest emergency room.

Q: What about routine health care for myself while I wait for the transplant?

A: You will need to come to all your appointments and follow your doctor's orders carefully.

If you are told to loose weight, start a diet and exercise program (reviewed with your doctor before starting), do not delay. The weight loss reduces your chances of developing high blood pressure, diabetes, and high cholesterol.

Be sure to keep your appointments with your dentist and eye doctor. Women should be sure to have regular Pap exams and mammograms. If appropriate, men should have their prostate checked yearly.

Practice good hand washing. This is one of the best ways to prevent infections.

Q: How long will I have to wait for a transplant?

A: The wait for a liver transplant can be long. In our part of the country there are many people in need of a liver transplant. Those who are the sickest will receive a transplant first. The Mayo End Stage Liver Disease Score (MELD) determines how ill someone is. More information on the waiting times and MELD scores can be found at this web site: http://www.ustransplant.org.

An excellent glossary of terms/words used in liver disease and liver transplant that may help you understand your disease and treatment can be found at: http://www.unos.org/resources/glossary.asp.

It is important to know that there are many medical criteria the doctors evaluate in determining when someone should receive a liver. Someone may have a high score, but if the available organ does not meet the other factors (like size, or condition of the organ), then it will not necessarily go to that person.

Q: Why do I need to have so many blood tests?

A: Everyone who is listed for a transplant is required to have their MELD score reported to UNOS periodically. As your score increases it will need to be updated more often, and you will need more frequent blood tests. It is very important that you do your blood tests when your doctor asks for them. A delay in these tests may mean your score will not be updated and may even be reduced in some circumstances.

Q: What should I do while waiting for the liver transplant?

A: Feeling anxious about when the transplant will occur is common. During this difficult time you can use the following suggestions to help you deal with these stressful feelings:

  • Spend time with family and friends. Having a good base of support is very helpful.
  • Share your feelings. Talk your feelings over with your family or the transplant social worker or in transplant support group.
  • Attend a support group. It is good to share your experiences with those who have been through the same thing.
  • Stay involved. Keep up your daily activities as best as you can. Try to keep attending school or work. Be involved in manning organ donation booths. Don't put your life on hold because you are waiting for a transplant.
  • Enjoy your leisure time. Enjoy your hobbies and pursue new interests. This will help distract you and keep you relaxed.
  • Take care of yourself. Eat right, get plenty of sleep, exercise regularly and take your medications as your doctor prescribes them. The transplant team will help you with a plan that is best for you.

Q: When should I call my transplant coordinator?

A: You should call your coordinator when:

  • There is a change in address or telephone number.
  • You go on vacation or out of town.
  • You are hospitalized.
  • You have been in the emergency room.
  • You change your medical insurance.
  • You have a change in your medical condition.
  • You have a change in your caregiver.
  • You have been prescribed a new medication.

Q: What happens during the surgery?

A: The surgery may take an average over 12 hours. While under general anesthesia, the surgeon will make an incision across the top of your abdomen beneath the ribs and vertically up to your breastbone (like a Mercedes symbol). The diseased liver and gall bladder are removed and the new healthy liver is sewn into place without a gallbladder. The bile duct is attached, a t-tube may be placed to drain the bile, and the incision is then closed. Possible complications from the surgery include blood loss, blood clots, infection, and rejection of the liver and or possibly death.