A liver transplant is a medical procedure that replaces a sick liver in one person with a healthy liver from someone else. Most of the time, a liver is donated from someone who has died. (This type of donor has been called a cadaveric donor, but now is generally known as a decreased donor.) When an organ donor dies, the liver is removed by a surgeon and sent to the transplant recipient as quickly as possible. Livers for transplant are matched for body size and blood type.

Living persons also can be considered for donating a portion of their liver to someone awaiting a transplant. (This type of donor is called a living donor.) The portion of the donated liver regenerates and grows to normal size. This procedure will be considered on a case-by-case basis by the VA Liver Transplant Centers.

A liver transplant is considered when a patient is at high risk of dying from liver disease. Just because a provider suggests that a patient be referred for a liver transplant doesn't mean that the patient will die right away without one. It typically takes a long time to go through the entire transplant process, so a provider may recommend a transplant far in advance to allow time for all the necessary steps.

Being told you should be considered for a liver transplant does not mean that you are in danger of dying right away.

A medical provider may think someone needs a liver transplant if they have symptoms of severe liver disease, which may include:

• Yellowing of skin or whites of eyes (called jaundice)
• Fluid in the legs (called edema) or in the belly (called ascites)
• Thinning of muscles, especially in the face, neck, and arms
• Easy bruising or bleeding
• Vomiting blood or passing blood in stool
• Impaired concentration or increased confusion (called encephalopathy)
• Changes in liver tests that suggest the liver is not healthy

Having these symptoms does not necessarily mean that you need a liver transplant. Some of these symptoms may be present in people who DO NOT have severe liver disease. If you are having any of these symptoms, contact your medical provider.

In some situations, very severe liver disease may exclude a person from receiving a liver transplant because the body is too sick to tolerate the surgery and recovery. A person may also be excluded if other parts of the body are too sick or have cancer. If cancer originates in the liver and is detected early enough, a transplant can cure the liver cancer.

The majority of transplants in the United States are currently performed in persons with hepatitis C. Patients with hepatitis C before transplant will still have it afterward. The virus will stay in the blood and infect the new liver. However, the new liver will work better than the old one, and hepatitis C usually takes many years to cause problems for the new liver.

Before a medical provider recommends a transplant, a patient will be evaluated by a hepatologist (or another medical professional who specializes in care of the liver). Other treatments will be considered with the hope that the liver disease can be managed without a transplant.

With a new liver, you should feel more energetic and healthy because your body is functioning properly again. Hopefully, you will also have a longer lifespan.

According to the Organ Procurement and Transplantation Network, for transplants performed between 1996 and 2001:

• Survival rate after 1 year is 88.1%
• Survival rate after 3 years is 79.7%
• Survival rate after 5 years is 74.3%

Transplant recipients who have hepatitis C have slightly lower-than-average survival rates after 3 years. These rates are still higher than those for a person with hepatitis C who is referred for transplant but doesn't get one. The 5-year survival rate for these persons is only 30% to 50%.

Patients being referred for a transplant have to go to a lot of medical appointments and undergo a lot of tests. The transplant process includes a long stay in the hospital and long recovery period after surgery. Also, there are always risks to going through such a major surgery, and the new liver can be rejected by the body.

Even after receiving a new liver, you will have many medical appointments. You also will need to take medications for the rest of your life, and may experience unpleasant side effects from them. Some of the medications are used to weaken your immune system in order to prevent your body from rejecting the new liver. This also means that your body will be less able to fight off other illnesses.

The actual liver transplant (surgery) and 7-day stay in a hospital usually costs between $150,000 and $250,000. The cost of medications following transplant is about $12,000 per year.

The VA covers the cost of evaluation and transplant for eligible veterans who chose to use their VA health care benefits and are referred to a VA Transplant Center. Some patients whose income level exceeds the threshold may be billed a co-pay for medications and/or services. (This will depend on your eligibility.)

Your referring provider (usually a hepatologist, but not always) will order tests to evaluate your liver disease. If he or she believes you would benefit from a transplant, you will need further tests and evaluations. This is called the "pre-transplant evaluation" or "workup." It occurs at your home VA medical center, and it can take several months.

If you decide to use your VA health care benefits, the first step toward a liver transplant is getting approval from the VA National Transplant Program Office located in Washington, DC, for an in-person evaluation at one of the VA liver transplant centers. This is done by having your "transplant referral" forwarded to a panel of physicians across the country for review.

Your evaluation and transplant may take place in a city or state different from where you live. There are 3 primary VA transplant centers: Portland, Oregon; Pittsburgh, Pennsylvania; and Houston, Texas. There are 2 other non-VA hospitals that have long-term contracts with the VA to perform liver transplants, in Richmond, Virginia, and Nashville, Tennessee.

If you are using VA benefits, the VA will pay for you and your support person's travel and lodging at a VA transplant center. A social worker or transplant coordinator from the transplant center will call you and schedule the evaluation at the transplant center, which generally takes 3 to 5 days.

One of the major concerns during this time is that you have psychological and social support available. This support can be a spouse, family member, or a close friend who is able to assist you with both the physical and mental aspects of the evaluation, the transplant, and the recovery.

They will need to live near you and provide assistance with all of your needs. This help is crucial for the process to be successful, because you may become too sick to get help or remember to take your medications. Without a support person, you will not qualify for a transplant.

Your personal support person will need to be available at all times, from the time of evaluation until about 2 years after the transplant.

If professional support is also needed, you will be referred to a psychiatrist or mental health therapist.

The evaluation will take approximately 1 week, but it can take longer, so you must pack accordingly. You will meet members of the transplant team, transplant surgeons, and other staff. You may be given many of the same tests already take in order to have the most recent information on your current health. Your mental and physical health also will be evaluated and your home/personal life will be assessed.

You will likely be asked to complete an advance directive, which is a written document that states what you want or do not want if you become unable to make your own health care decisions.

Details on advance directives, including forms to fill out, are available in the Resources (http://www.hepatitis.va.gov/trans-resources) section.

Getting a liver transplant is stressful to your body. Not everyone who needs a transplant can survive the major surgery involved.

Some things that might prevent a person from surviving a liver transplant include:

• continuing to use alcohol or illegal drugs
• being unable to follow your doctor's instructions, such as taking your medicine when you are supposed to
• having too little support from people to care for you after the surgery
• having cancer of the liver
• having had another kind of cancer in the past 3 to 5 years
• having heart, lung, or kidney disease
• having advanced HIV disease (AIDS)

• get treatment for substance abuse problems
• always follow your doctor's orders
• do not drink alcohol, smoke tobacco, or use drugs
• get treatment for mental illness, such as depression
• eat healthy meals and lose weight if your doctor tells you to
• get treated for other health problems, such as diabetes, high blood pressure, and high cholesterol
• have social supports available
• attend all evaluations and appointments
• ask questions!

After the evaluation, you will be notified by mail and by phone as to whether you are:

Accepted - You have met all of the medical, psychological, and social criteria and are ready to be placed on a waiting list when any pending tests are completed.

Deferred - You have some medical or psychosocial issues that need to be taken care of (needing dental work or not having adequate social support, for example). Being deferred means that you need to address the concerns raised in the evaluation before proceeding.

Declined - You may have some medical or support issues that disqualify you from being on the waiting list. These may include ongoing use of drugs, alcohol, or tobacco or other potentially fatal illness, such as cancer outside the liver, or heart disease. If you are a current alcohol or drug user, you will be declined. You may need to demonstrate at least 6 months of abstinence from alcohol and drugs and may be asked to complete an alcohol/drug treatment program to be considered for transplant. You will not be added to the waiting list if you are currently using tobacco.

Remember: There are not enough donor livers for all the patients who need them--and many patients die while waiting for a liver to become available. This is why the evaluation team must carefully select those patients most likely to survive.

Once on the list, it could be 5 hours to 5 years before you get a transplant, although most people wait 1 to 3 years. As of fall 2005, there are 17,495 people nationwide waiting for a liver transplant. Priority is given to the sickest individuals. Approximately 5,000 liver transplants are performed per year in the United States.

It is important for you to take medications as prescribed, attend all scheduled appointments and report any changes in health to medical providers. It is also important to exercise and try to keep up some social activities. Though you may feel sick, it will benefit your health to be as active as you can be. Even short walks will help.

The method for determining who gets an available liver is complicated. As part of this process, the Organ and Procurement Transplantation Network (OPTN)/The United Network for Organ Sharing (UNOS) have developed a system for prioritizing patients waiting for liver transplant (see Resources (http://www.hepatitis.va.gov/trans-resources) ).

This system is called the MELD Score (Model for End-Stage Liver Disease). It is based on statistical formulas that are very accurate for predicting which individuals are most likely to die soon from liver disease. The number is calculated by a formula using 3 routine lab tests:

• bilirubin (high levels mean liver damage, or blockage in the ducts of the liver)
• INR (a system of reporting the results of blood clotting tests)
• Creatinine (elevated levels usually indicate problems with the kidneys)

VA patients are on the same UNOS waiting list as other patients in their region. Generally those with the sickest livers will be put at the top of the list.

When your name comes to the top of the waiting list, a transplant coordinator will notify you by phone or pager to come to the transplant center. Once you are at or near the top of the list, you may need to live nearby the transplant center for up to 2 to 3 months, as you will need to be at the transplant center within 6 hours from the time you are called for transplant. The transplant center will let you know if this is the case.

After the transplant, you will need to take daily medications that inhibit your immune system. These medicines, called immunosuppressants, will stop your body from rejecting your new liver.

In the beginning, you will see your health care provider frequently. Medical appointments will be less frequent with time (as long as your health remains stable). You will feel better physically because your sick liver has been replaced with a healthier one. If you had hepatitis C prior to transplant, your symptoms of hepatitis C will be reduced greatly. You will still have hepatitis C and may need treatment later. The need for this will be monitored.

• For the first 3 months after the transplant, your blood will be checked twice a week.
• From 3 to 6 months, your blood will be checked once a week.
• From 6 to 12 months, your blood will be checked every other week.
• After 1 year, your blood will be checked monthly, for the rest of your life.

One of the purposes of frequent blood tests is to watch for any changes in the condition of your transplanted liver. These guidelines are specific to your transplant center as well as to your own recovery.

Usually, patients feel better immediately after surgery and continue to improve as time progresses. Recovery takes between 6 and 12 months. The transplant team will let you know when you can return to work. After the first year, you should be "back to normal." However, your lifestyle will likely change for the better. You may notice physical changes and, likely, mental, emotional, and spiritual changes as well.

Changes may be positive or negative or both.

• You may feel healthier physically because you have a new liver that functions properly. However, you may feel sick from medication side effects or have discomfort from the surgery. You may even have other medical conditions that continue or develop.
• Depending on the severity of your condition before the transplant, you may experience more mental clarity.
• Emotions will vary and may include feeling happy and ecstatic about having another chance at life. Sometimes, liver transplant recipients feel depressed considering that their donor may have died to help them. Others feel guilty because they don't believe they deserve a second chance.
• For some people, the idea of having another person's organ in their body can be uncomfortable. Having a part of one's body removed is a loss that can lead to a variety of emotions as well. If you have these feelings, you may wish to discuss them with friends or family, or with a therapist or spiritual leader.
• Some liver transplant recipients feel closer to God or feel they have been given a spiritual gift of life. Others do not have any spiritual reaction. The patients or their loved ones also may have strong religious, spiritual, or moral beliefs about transplants.

• You will need to plan travel carefully and consider how you will have quick access to medical care if needed. You may want to avoid traveling to places with a high incidence of diseases that could be spread through water, food, or bug bites.
• You will be discouraged from participating in activities that pose a high risk to your health, such as sports where there is extreme exertion or exposure, such as hiking in a desert.
• If you want to consider having a child, you must discuss this with the transplant team prior to conceiving.

"I was diagnosed with hepatitis C in 1996. I had no idea what the disease was or what its treatment was all about. At the time, there were no support groups and very little in the way of education for veterans; I didn't really know how to take care of myself (or my liver). After a long battle to get help failed, I ended up in liver failure and had to be transplanted. Though the process of evaluation for transplant was trying and at times, overwhelming, my faith and desire to live helped me persevere. My transplant was successful and I'm grateful to be alive. While I am limited in certain respects, I am able to live a very prosperous life. I have found educating and assisting others who struggle with liver disease to be very fulfilling."

Gene Mask, Longview, WA
Veteran
Transplanted in 2000

"The best job I've ever had was being Amy's mom. Becoming a donor mom was the result of a tragic accident. Amy gave so much in her short, almost 18 years, and now her legacy continues. I am so proud of my daughter and equally as honored to be able to speak passionately about the importance of organ and tissue donation. In a world so full of turmoil, I live in peace and comfort knowing that lives have been saved, families spared the pain of loss, sight restored and bodies mended. So much good out of one very special young lady. Of course, I miss her terribly, but I get to brag about her and all the wonderful good she has done. How cool is that!"

Terry Hegerle, Vancouver, WA
Donor Mom
Terry's daughter Amy passed away in 2000

• Considering a Liver Transplant (booklet) (http://www.hepatitis.va.gov/trans-book)
• VA Advance Directive: Durable Power of Attorney for Health Care and Living Will (http://www.va.gov/vaforms/medical/pdf/vha-10-0137-fill.pdf)
  • What You Should Know about Advance Directives (http://www.va.gov/vaforms/medical/pdf/vha-10-0137B.pdf)
  • Your Rights Regarding Advance Directives (http://www.va.gov/vaforms/medical/pdf/vha-10-0137A-fill.pdf)

• VA National Transplant Program (http://www1.va.gov/transplant/)
• American Liver Foundation (http://www.liverfoundation.org)
• The Coalition on Donation (http://www.shareyourlife.org)
• National Transplant Assistance Fund (http://www.transplantfund.org)
• Transplant Recipients International Organization (TRIO) (http://www.trioweb.org)
• TransWeb (http://www.transweb.org)
• Organ and Procurement Transplantation Network (OPTN)/The United Network for Organ Sharing (UNOS) (http://www.unos.org)
• West Point Organ Donor Site (http://www.west-point.org/organdonor/)