Patient Checklist for Hepatitis C Evaluation

Simple steps to get evaluated for a liver transplant list
Author: Sarah Aldridge

Download a printable copy of this Patient Checklist.

Read more about hepatitis C evaluation and how to get on a national liver transplant list.

If you have been diagnosed with hepatitis C virus (HCV) and the treatments have not worked, you have other options to consider. Here are some simple steps to make sure you get evaluated in a timely manner and placed in the “system” for a liver transplant, if appropriate:

1. Review your options for antiviral drug therapy to clear the HCV and discuss your plan for hepatitis care. Your hematologist can refer you to a hepatologist, or liver specialist, who will become part of your care team. Your hematologist can monitor your platelets, which may decrease as a result of HCV. If you have HIV, you should also be on effective drug therapy; uncontrolled HIV can accelerate liver damage from HCV.

HCV treatments should be discussed with both your hematologist and hepatologist. While they can be difficult to take—there are many side effects and the regimen can last 48 weeks—they may clear the HCV. Newer therapies with even higher success rates of clearing the HCV are in late-stage clinical development and could be available next year.

2. Determine your Model for End-stage Liver Disease, or MELD, score. It is a measure of liver function and liver disease progression. The MELD score is used to determine when a person requires a liver transplant. It is calculated using a mathematical formula that plugs in three values:

  1. Your bilirubin count, a liver test
  2. Creatinine, a kidney function test
  3. International normalized ration (INR), which measures clotting factor levels

Different institutions may use slightly different cutoffs; other tests are used also in pre-transplant evaluation. Obtaining a baseline MELD score will serve as a basis for comparison of future MELD scores and update liver disease status, especially to help assess new symptoms.

3. Get evaluated at least annually by your hepatologist. The ongoing follow-up is crucial to detect small changes over time. It also helps assess response to new treatments or interventions for liver disease. A hepatologist can also help determine if new symptoms—fatigue, weight gain, bleeding in the gastrointestinal (GI) tract, memory loss—indicate that your liver disease is getting worse. If so, you may need to be seen every three months.

4. Get a periodic imaging scan that detects hepatocellular carcinoma (HCC), a type of liver cancer. Most patients have no symptoms. The scan can determine if there are other issues. Your hepatologist will determine how often the scan is needed.

5. Keep advocating for your health needs. Even if you have no symptoms, you should undergo baseline testing, including calculating your MELD score. Your age and how long you’ve had hepatitis C are critical predictors of liver disease progression. Most people with hemophilia and hepatitis C have had the virus since their first transfusion, says Margaret Ragni, MD, MPH, director of the Hemophilia Center of Western Pennsylvania and professor of medicine at the University of Pittsburgh. 

It is never too early to have a liver evaluation performed. If you feel you are getting sicker, ask your hematologist to call your hepatologist to see if you are eligible for a transplant. Your hepatologist can connect you with a liver transplant center.

6. Ask about the alpha feto-protein, or AFP, blood test. It is a marker for HCC and should be monitored regularly. AFP is also the best predictor of liver fibrosis; increasing levels may signal changes occurring in the liver and the need for liver biopsy.

7. Establish a support system at home. Your support can come from a spouse, parent, child, friend, cousin, etc. But you MUST have home help following a liver transplant. In addition, some of the best support for hemophilia patients is the staff at their hemophilia treatment center (HTC). Do not hesitate to talk over any concerns with them.

Symptoms of Liver Disease

It is important to realize that although your liver disease is getting worse, you may have no symptoms. Or, symptoms can be vague, such as feeling tired, gaining weight, becoming more forgetful—all easy to dismiss as signs of aging. Some patients experience GI bleeding; others have a low platelet count. Even if your symptoms seem mild, it is best to seek medical care when you first notice changes.

The MELD Score

Even if your doctor is already measuring your bilirubin, creatinine and INR values, you or your HTC nurse can go online to calculate your current MELD score. All you do is enter the values; the calculator does the mathematical computation.

The MELD score ranges from 6 to 40, with 40 being the sickest patient. For a person with hepatocellular carcinoma, the MELD score is automatically higher. The HCC evaluation is based on three factors—the TNM: T stands for the extent of the tumor; N for the involvement of lymph nodes; M for metastasis, or whether the cancer has spread to other organs.

The MELD formula is:
3.8 x log (e) (bilirubin mg/dL) + 11.2 x log (e) (INR) + 9.6 log (e) (creatinine mg/dL)