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Frequently Asked Questions

Am I a good candidate for a liver transplant?

You will need a thorough evaluation by the Transplant Institute staff, in consultation with referring physicians, to determine if transplantation is the best treatment option. Being a good candidate for transplant depends upon your physical health, emotional well-being, and ability to manage medication and care plans.

How do I get a liver?

Patients who need a liver transplant are listed with the United Network for Organ Sharing (UNOS). UNOS administers and maintains the national organ transplant waiting list.

The New England Organ Bank (NEOB) is the local (regional) procurement organization for Beth Israel Deaconess Medical Center, and shares organs through UNOS. Staff at NEOB will enter your medical information into a computer and will notify our transplant team when a liver becomes available, based on several factors including your blood type, weight and Model for End Stage Liver Disease (MELD) score. Liver transplants require blood type compatibility, although in emergency situations blood type incompatible liver transplants can be done. We have developed a very successful protocol for doing these transplants that has been  published and used by other centers. Livers must also be matched by size. Finally, every patient listed for liver transplantation is assigned a MELD score (based on three laboratory values) that measures the severity of your liver disease (the higher your score, the more urgently you need a liver to survive).

All organ procurement organizations and Transplant Institutes belong to UNOS. The NEOB operates according to policies set by UNOS, which is supervised by the federal government. Donor livers from deceased individuals are a precious national resource. Transplanting well-matched livers is a complex process. Please talk to the Transplant Institute team if you have questions.

What does whole, split and reduced-size liver mean?

A liver from a deceased donor can be used in two ways: The whole liver is used in one person (almost always the case), or the liver is split between two recipients (done very uncommonly). The liver's unique ability to grow back to its normal size makes split-liver donation possible. The right lobe, which is larger, goes to an adult. The left lobe, which is smaller, goes to a child or a small adult.

In liver transplantation, matching organ size from donor to recipient is very important. Today, thanks to new harvesting and preservation techniques, surgeons can take a deceased donor liver and reduce its size for a closer recipient match. These protocols make it possible for the donor to weigh much more than the recipient.

Split and reduced-size liver transplants have extended the availability of deceased donor liver organs. Still, because there is a shortage of organ donors, there is no guarantee when a donor liver will become available.

What is a domino liver transplant?

In very rare occasions, transplant surgeons can perform a domino liver transplant. A first recipient receives a liver from a deceased donor. This first recipient is then able to donate his or her liver to a second recipient, who is not likely to experience the same type or extent of liver disease. For example, some people require a liver transplant because they have a disease called familial amyloidosis. After a person with familial amyloidosis receives a new liver, however, he or she can donate the removed liver to another who is waiting for a liver transplant. This donation is possible because the patient's liver is not actually diseased and should function normally in another individual.

Although familial amyloidosis prevents the liver from processing certain proteins properly, which eventually causes damage to arms, legs and internal organs, its effects generally are not noticeable for 40 to 60 years. Because this process takes place so slowly over the course of a lifetime, the person who receives this liver likely will never experience any of the problems associated with familial amyloidosis.

Though rare, there are other liver diseases that make domino liver transplants possible. While domino liver transplants can help expand organ availability, they are still considered experimental protocols and require special patient consent.

How long will I wait on the list?

There is no guarantee when a deceased liver will become available. It could be months or years. The average waiting time for a deceased donor liver in New England is about one year; however, prioritization for liver transplantation depends on severity of liver illness rather than waiting time. The waiting time is longer for patients with blood type O or B, and shorter for patients with blood type A or AB.

What is a MELD Score?

The United Network for Organ Sharing (UNOS) has developed an objective way of scoring the severity of a patient's liver disease to predict who needs a liver transplant most urgently. The Model for End Stage Liver Disease (MELD) score is based on three laboratory values: creatinine (measure of kidney function), INR (measure of clotting function and liver function), and bilirubin (measure of liver function). The higher your MELD score, the more urgent your need is for transplantation. This score is then used to prioritize the organ waiting list so that the sickest people are transplanted first. The MELD score's numerical scale ranges from 6 (patients who are less ill) to 40 (patients who are gravely ill). A patient's MELD score can change a number of times, based on the progression of his or her liver disease.

What are my options if I have the HIV virus?

The Transplant Institute at BIDMC is one of 20 transplant centers in the United States - and the only center in New England - participating in a National Institutes of Health (NIH) sponsored clinical trial of kidney and liver transplantation in patients who test positive for the human immunodeficiency virus (HIV). HIV is responsible for acquired immunodeficiency syndrome or AIDS.

Until recently, these patients, who have a high risk for end-stage liver disease, typically were not considered for transplantation because of their poor long-term prognosis. However, new treatments, such as highly active antiretroviral therapy (HAART), have improved the outlook for HIV, and that, in turn, has opened the door for transplantation to more people who test positive for this virus.

What medication must I take?

You must always take anti-rejection medications for as long as you have a functioning transplant. You will also need medications to prevent infection for a short time after your transplant. Additionally, you may need at some point in time medications to control blood pressure and prevent fluid retention.

You are responsible for managing your own medication schedule, as determined by the Transplant Institute team. You should never stop taking your medication or change the dose without approval from the transplant team, even if you experience unpleasant side effects. Tolerating some side effects temporarily may be necessary in order to prevent organ rejection. Tell your transplant team about any side effects that bother you. Your doctor may be able to adjust your medication.

What if I reject the new liver?

Rejection is a signal that your immune system has identified the new liver as foreign tissue and is trying to get rid of it. Preventing rejection with immune-suppressing medication is the first priority. Most rejection episodes cause no symptoms and are identified as increased liver function tests on routine blood work check-ups. This is why you need frequent blood testing in the first three months after transplantation, and regular testing after that. If the rejection episode is verified through liver biopsy, then the transplant team will increase the amount of anti-rejection medication or prescribe a different combination of anti-rejection drug therapy. Using medicine, we can successfully reverse most rejection episodes, if we detect it early enough. However, if the episode is severe, it may shorten the overall life span of the new liver.

How often will I have to go into the Transplant Institute after my transplant?

For the first six months after your transplant, you will have frequent follow-up visits with the transplant team and frequent laboratory tests. Gradually, however, you will see the transplant team less often. At this stage, you can look forward to having more time for yourself and your activities. You will become even more responsible for maintaining your own health.

As you begin to see the transplant team less often, many of your healthcare visits will be to your primary care physician and/or hepatologist and other specialists as needed. Always tell your healthcare providers that you have had a transplant, so if you do become ill, they can determine whether your symptoms are, or are not, related to your transplant. We recommend you keep a list of your current medications, as well as any drug allergies, with you at all times.

When will the T-tube come out?

Surgeons insert a T-tube, or drainage tube to promote healing, when they remove your diseased liver and your gallbladder. If you still have a T-tube in place following your transplant surgery, doctors perform a cholangiogram at six weeks and again at four months. A cholangiogram is a special X-ray, using dye injected through the T-tube, so doctors can check to be sure your bile ducts and liver are healthy. If the cholangiogram is normal at four months, doctors will remove the T-tube.

Do I have to follow a special diet after a liver transplant?

Because of the medication you must take, transplant patients are more likely to be affected by germs that may be on or in foods. You should wash all fruits and vegetables thoroughly before eating and avoid raw or undercooked meat, poultry, fish, sushi, raw shellfish and raw eggs in any form (including cookie dough and eggnog). Raw shellfish may increase your risk of serious infection from Vibrio vulnificus. (You can read more about the dangers of this bacterium at SafeOysters.org.) Also, you cannot have grapefruit or any juices or beverages containing grapefruit because they will interfere with your medications.

Because you feel better with your new organ, your diet will be less restricted. Also, some medicines may increase appetite. Therefore, it is very important for you to follow a healthy diet to avoid gaining too much weight. The transplant team works with each patient to develop an individualized diet plan, taking into consideration special needs and restrictions.

Can I exercise?

Yes! It will take time to regain strength and endurance after a transplant, but eventually you can resume normal activity. Walking and stair climbing are excellent exercises for maintaining muscle tone and strength. You should consider walking 5 to 10 minutes a day when you first arrive home following surgery and then slowly increase the time you walk each week. Do not begin strenuous exercises, such as contact sports, jogging, tennis and weightlifting, for at least two months after the operation. It is normal to tire easily so you should rest when tired.

Are there any restrictions I must follow?

You should not smoke after transplant and every attempt to quit prior to the transplant is crucial to extend your life and the life of the new liver. Under NO circumstances should you use alcohol, cocaine, heroin, marijuana or any illicit drugs, as they WILL put your transplanted organ at risk.

The transplant team will let you know when you can begin to drive again, return to work or school, and travel. You can decide when to resume sexual activity depending upon how you feel. Postoperative discomfort usually does not interrupt sexual activity for more than a few weeks.

How do I pay for a transplant?

The financial coordinator on the transplant team, along with the social worker, will help you map out a financial plan to cover costs associated with transplant care, surgery and medication. Patients typically finance costs associated with their transplant by combining more than one financial resource. There are several options for those who do not have any type of health coverage, and there are policies and laws designed to help transplant patients with special financial needs. The Transplant Institute's social worker and financial counselor help develop a workable plan for each patient.

What are my out-of-pocket costs after the transplant?

Out-of-pocket costs following a transplant are highly variable, based on whether you have insurance or whether you are eligible for Medicare or Medicaid coverage. We understand that finances are a major concern for patients, and good planning will help to reduce this stress. Your financial counselor will review your own unique situation, and help you on an individual basis address your financial concerns and available resources. Together we can help you manage the financial impact of your illness, transplant surgery and long-term recovery.

Whom do I call for more information?

For more information about the Transplant Institute at Beth Israel Deaconess Medical Center, please call 617-632-9700.

Additional links for frequently asked questions:

American Association for the Study of Liver Diseases
www.aasld.org

American Liver Foundation
www.liverfoundation.org

United Network for Organ Sharing (UNOS)
www.unos.org

New England Organ Bank (NEOB)
www.neob.org

The Organ Procurement and Transplantation Network
www.optn.org

Contact Information

Transplant Institute
Beth Israel Deaconess Medical Center
Lowry Medical Office Building, 7th Floor
110 Francis Street
Boston, MA 02215
617-632-9700