Our Philosophy of Care
At the University of Rochester Medical Center, we believe a liver transplant is a lifelong commitment for you and for us. We will stay involved with you and your family through the entire transplant process. We get to know you very well and recognize that preparing for and living with a transplant will affect your lifestyle in many ways. We will help you maintain and resume many of your activities and even become involved in new ones.
We are committed to the time, effort, and resources required to make your transplant a success. Our definition of success extends far beyond the operating room. We will work with you to make your life after the transplant as successful as possible.
What Does the Liver Do?
The liver is one of the largest organs in the body and is located in the upper right portion of the abdominal cavity immediately below the diaphragm and behind the lower right part of the ribs. It is divided into eight anatomic sections and two lobes and has many important, complex functions.
Among them are:
- Removing or neutralizing toxins (poisons), germs, and bacteria from the blood
- Making immune agents to control infection
- Making proteins that regulate blood clotting
- Making bile, a fluid that aids digestion by helping to absorb fats and fat-soluble vitamins (bile ducts carry bile from the liver to the intestine)
- Storing vitamins and other nutrients the body needs, including sugars to produce energy
You can’t live without a functioning liver.
Several diseases can injure the liver and stop it from working correctly. These include:
- Cirrhosis: Scar tissue replaces normal, healthy tissue, blocking the flow of blood through the organ and preventing it from working as it should; the two most common causes of cirrhosis in this country are Hepatitis C virus infection and excessive alcohol consumption. However, there are many other causes, including autoimmune diseases such as primary biliary cirrhosis and sclerosing cholangitis, congenital and genetic diseases such as biliary atresia and alpha 1 antitrypsin deficiency, and metabolic diseases such as Wilson’s disease.
- Non Alcolohic Fatty Liver Disease (NAFLD) and Non Alcoholic Steatohepatitis (NASH): Fatty liver disease is the most common cause of liver dysfunction in this country and is associated with the obesity epidemic. Most morbidly obese people have fatty livers and 70% of people with Diabetes Mellitus Type II have fatty livers. Fatty liver disease can progress to inflammation and cirrhosis (NASH). NASH is predicted to become the major reason why people need liver transplants within the next decade.
- Hepatitis: Inflammation or swelling of the liver can be caused by a viral infection. There are several types of viral hepatitis; the most common are known as:
- Hepatitis A
- Hepatitis B
- Hepatitis C (the most serious and the most common cause of cirrhosis requiring liver transplantation)
- Liver Cancer (Hepatocellular Carcinoma): Cirrhosis of any cause increases one’s risk of developing liver cancer. Hepatitis C virus cirrhosis greatly increases this risk. Anyone with cirrhosis should undergo frequent screening with imaging studies (MRI, CT, or ultrtasound) and blood testing for AFP (alpha fetoprotein, a marker for liver cancer). People with liver cancer may undergo transplant as long as the cancer is not too large and has not spread outside of the liver.
These diseases, and others, can be treated in a number of ways. But if they have progressed far enough and a liver is damaged badly enough, and if other treatments have been unsuccessful, a liver transplant may be the best treatment option. Your primary doctor will make the referral to the Strong Health Division of Solid Organ Transplantation.
What is a Liver Transplant?
In a liver transplant, the patient’s diseased liver is surgically removed and replaced by a healthy liver from a donor. Usually, healthy livers come from donors who have recently died but did not have liver injury. This is called deceased donor transplantation. However, segments of liver can be taken from a living organ donor who may be a family member or friend. This procedure is called living donor transplantation.
Is a Liver Transplant Right For You?
A liver transplant is offered only to people who have irreversible, chronic liver failure. Usually, other medical or surgical treatments have been tried before a transplant is considered. Age is not necessarily a factor in deciding if you’re a candidate for liver transplant. Newborns, infants, children, and adults past the age of 70 have all had successful liver transplants.
What is important is your general health and suitability for major surgery. For example, you can’t have a transplant if you have:
- Cancer in another part of your body
- Serious heart, lung, kidney, or nerve disease that would make the operation too risky
- Active alcoholism or illegal drug abuse
- An active, severe infection that can’t be completely treated or cured, such as tuberculosis
- An inability to follow your doctor’s instructions
Of course, all major surgery carries risks, and a transplant is no exception. The risks associated with surgery in general are:
- Reactions to anesthesia
- Problems breathing
Transplants carry additional problems, such as:
- Rejection (the body considers the transplanted organ to be a foreign substance and uses its natural immune system to destroy it)
- Life-long need to take medicines (immunosuppressive drugs) that prevent rejection by suppressing the immune system and weakening the body’s ability to fight infections
- Finding a healthy organ
Despite these risks, a transplant may be the best treatment option for your condition. Liver transplants do save lives. About 75% of people survive at least 3 years or more after the transplant.
The Transplant Process
In addition to the information that follows, you can get a brochure about liver transplants at Strong Health. You can read the complete brochure by calling us at 585-275-5875.
When you’re referred to us for a liver transplant, a five-step process will begin.
The first step in the transplant process is evaluation. The liver transplant team evaluates your condition and decides if you are a good candidate for a transplant. Our team includes:
A liver specialist
A social worker
Other health care professionals
Usually within a week after you’re referred to us, a transplant coordinator will call you to discuss the evaluation process and set up your appointments. We’ll also do a preliminary financial and insurance coverage assessment.
For the evaluation, you will have two or three outpatient visits at Strong Hospital. You will have a number of diagnostic tests on your first visit. The second visit is usually a week or two after the first, but the whole evaluation process can be completed within 12-48 hours for a critically ill person. We strongly urge you to bring one or two other people, who will become your support system, to all meetings.
Among other things, the tests will show if you have complications or conditions that might adversely affect your surgery. If problems are found, you may be referred to the appropriate specialists at Strong Health who can help you with them. You’ll also talk to a financial counselor about insurance and other ways of covering the costs of the transplant and follow-up care.
After the evaluation, the results are given to the Liver Transplant Patient Evaluation and Selection Committee. It uses the Patient Selection Criteria and Implementation Plan to decide if you’re a suitable candidate for a liver transplant. You can read the complete plan by downloading it now, or get a copy by calling us at 585-275-5875.
If you don’t become a transplant candidate, the transplant team will support your primary care doctor, as appropriate, in managing your liver disease. If you do become a candidate, you’ll be put on the waiting list for a donated liver unless you have a living donor willing to donate part of his/her liver to you. If you have a living donor, the transplant surgery can be scheduled soon after donor approval is complete.
Waiting for an Organ
Unfortunately, there are many more people on the waiting list than there are organs available each year. Currently, more than 18,000 people in the United States are waiting for a donor liver. The wait can last several years. That’s why becoming an organ donor is so important.
National Waiting List
The national waiting list for donated organs is maintained by the United Network for Organ Sharing (UNOS). In 1984 Congress passed the National Organ Transplant Act to address the grave shortage of organs and improve organ matching and placement. The act set up the Organ Procurement and Transplantation Network (OPTN) to maintain a national registry for organ matching. The network was to be run by a private, non-profit organization under federal contract. UNOS, the United Network for Organ Sharing, is that organization.
The network consists of 58 OPOs (Organ Procurement Organizations) across the country. Each is responsible for a specific region. For the Rochester, Syracuse and Finger Lakes region, the OPO is the Finger Lakes Donor Recovery Network (FLDRN). Affiliated with the University of Rochester Medical Center, FLDRN coordinates organ donation in 19 counties with a population of 2.4 million, and serves 44 hospitals in the Finger Lakes region, central and northern New York. The phone number is 585-272-4930.
Policies on Organ Donation
The UNOS and OPTN community includes medical professionals, patients, donors, their families and friends. Working together, the OPTN sets the policy on organ donation for the country, subject to approval by the U.S. Department of Health and Human Services (HHS). These policies are circulated for public comment and can be viewed at the UNOS Web site.
Currently, the policy groups people waiting for an organ by the severity of illness (as estimated by the MELD score described below) and other medical factors, such as blood type. The sicker your liver is, the higher you are on the list. Only a few exceptions to this system exist. For example, if a patient has a liver cancer that is not too large and has not spread outside the liver, then they can move slightly higher on the list so that their cancer does not spread before a liver becomes available. Also, if a patient develops sudden liver failure (usually as a result of ingesting a substance that is poisonous to the liver), then that patient automatically goes to the top of the list.
Model for End-Stage Liver Disease (MELD)
The Model for End-stage Liver Disease (MELD) score is based on three simple blood tests and ranges from 6 (normal) to 40 (very ill). The MELD score is predictive of death within 3 months (the higher the score, the higher the risk of death). Candidates with sudden, acute liver failure are allocated organs ahead of all other waiting patients.
While You Wait
While you’re on the wait list, you’ll have regular follow-up appointments with the transplant team and follow a set of important instructions. For example, you must tell us if:
Your liver disease progresses
Your address or telephone number changes
You change or lose insurance coverage
You travel out of town
You need to have regular dental examinations and treat any tooth decay or other oral infections
Any other changes occur that may affect your medical care
You must be ready at all times to come to the hospital when called, and you can be called at any time for a transplant. Carry a pager or cell phone with you at all times. If you don’t have one, contact our office and we’ll assign you a pager. Also, you should continue to have regular appointments with your gastroenterologist or primary care physicians.
You’ll be contacted when a liver is available. If your new liver is from a living donor, both you and the donor will be in surgery at the same time. If your new liver is from a person who has recently died, your surgery starts as soon as the new liver arrives at the hospital. The liver must be transplanted within 12 to 18 hours.
The surgery can take from 4 to 14 hours. You will be given general anesthesia. While the surgeon removes your diseased liver, other doctors prepare the new liver. The surgeon makes an incision in the upper part of your abdomen and then disconnects your diseased liver from your bile ducts and blood vessels before removing it. The blood that flows into your liver will be blocked or sent through a machine to return to the rest of your body. The surgeon will put the healthy liver in place and reconnect it to your bile ducts and blood vessels. Your blood will then flow into your new liver.
Your total hospital stay after surgery will likely be anywhere between 10 days and several weeks and depends on how sick you were immediately prior to your surgery and how complicated the surgery was. Immediately after surgery, you’ll be taken to the Surgical Intensive Care Unit (SICU), where the average post-transplant patient with no complications stays for about two days. Your primary care doctor and/or gastroenterologist will be given information about your surgery and current condition.
From the SICU you’ll go to the Inpatient Transplant Unit. Here, you’ll take medicines to prevent infections and rejection of your new liver. Your doctor will check for bleeding and other problems. You’ll slowly start eating again. You’ll begin with clear liquids, then switch to solid food as you continue to recover.
You’ll also be prepared for your return home. You’ll be given a schedule for follow-up visits and routine blood draws, and a 24-hour phone number for emergencies or other problems. You’ll learn how to deal with the medicines you’ll be taking and their side effects, recognize rejection symptoms, plan proper diets and generally take responsibility for your recovery at home. The transplant coordinator, social worker, and psychiatrist are all available when needed. The social worker will help arrange your discharge needs, such as rehabilitation or long-term placement, chemical dependency counseling, and transportation home. You’ll also be offered a referral to a community health nurse who can help you at home.
Long Term Management
After you leave the hospital, you’ll return on a regular schedule for follow-up visits. A medical team will follow your progress throughout your life. You’ll have regular blood tests to check that your new liver is not being damaged by rejection, infections, or problems with blood vessels or bile ducts. Problems are most likely to occur within the first six months after the transplant. Over time, both the frequency of lab tests and the doses of medicine are reduced.
You’ll need to eat a healthy diet, exercise, and not drink alcohol, especially if alcohol caused the damage to your old liver. Use medicines, including over-the-counter, only if your doctor says they’re safe for you. It is important to follow your doctor’s advice to take care of your new liver.
Returning to Normal Activities
After a successful liver transplant, most people can go back to their normal daily activities. Getting your strength back will take some time, though, depending on how sick you were before the transplant. You’ll need to check with your transplant team on how long your recovery period should be. Social workers and support groups will help you adjust to life with a new liver.
Eventually, though, you’ll be able to return to work, engage in normal exercise, and return to a normal sex life. However, women should avoid becoming pregnant during the first year after a transplant. It’s best to consult with your doctors about sex and pregnancy.