Living Well with Hepatitis C

Hepatitis C and I have been together since 1988. I am a nurse who has worked in this field for more than fifteen years, and I am also a patient with the disease myself, one who’s had three rounds of treatment. So I know quite a bit about hepatitis C. I am frequently asked how I manage my health in the face of having hepatitis C. For me, it comes down to making health a priority. Hepatitis C is much easier to live with when I take care of myself. Here is a list of important steps to take that are the foundation for living well with hepatitis C.

  1. Be sure you have hepatitis C. This may sound odd, but I know quite a few people who thought they had hepatitis C, but didn’t. This is because they were told they had hepatitis C based on an antibody test only. At least 25 percent of people or more test positive for hepatitis C antibodies when they don’t actually have the disease. They were exposed but their immune systems fought it off naturally.  If an antibody test comes up positive, you should get a viral load test; that will confirm whether you actually have hepatitis C or were merely exposed to it.
  2. Get regular medical check-ups. Hepatitis C patients generally see their doctor every six to twelve months, depending on how they are doing. If you have cirrhosis (severe scarring of the liver), you will need more frequent medical visits. If you don’t have insurance, look for no or low-cost clinics. In October 2013, people may begin to sign up for insurance under the Affordable Care Act, with coverage beginning in 2014.
  3. Discuss hepatitis C treatment with your doctor. Hepatitis C is curable about 80 percent of the time.
  4. Get immunized against hepatitis A and B, unless you’ve already had those infections (if you have had either hepatitis A or B, then you don’t need immunization for whichever one you had).Because your liver is already dealing with the damaging effects of hepatitis C, it’s important to do what you can to protect it in other ways.
  5. Do not drink alcohol, because alcohol also stresses your liver. If you can’t stop alcohol or other drug use, get help.
  6. Avoid raw or undercooked shellfish, which may contain a kind of bacteria that is particularly dangerous for people with liver disease. Do not eat non-commercial wild foraged mushrooms — every now and then, people accidentally pick a kind that contains liver toxins.
  7. Talk to your doctor or nurse about the safe use of acetaminophen. This drug is the safest pain reliever available, but acetaminophen overdose is the leading cause of acute liver failure in the United States. Never exceed recommended amounts, and be sure you include acetaminophen from all sources when calculating your usage. Acetaminophen is found in hundreds of prescription and over-the-counter drugs, such as cold, cough, sinus, sleep, and pain medications. Most liver specialists tell patients not to exceed 3000 mg daily (taken in divided doses — not all at once).
  8. Everything passes through the liver, so know what you are taking. Do not use iron supplements or multivitamins with iron without discussing it with your doctor. Too much iron can harm the liver. Tell your doctor everything you take, including herbs, minerals, non-prescription drugs and prescription medications.
  9. Educate yourself about hepatitis C. Many excellent websites provide solid hepatitis C information.
  10. Join a hepatitis group. Community and web-based groups can be sources of support, information, and tips for healthy living with hepatitis C. Choose groups carefully, looking for participants who are knowledgeable and who respect confidentiality.
  11. Learn how to avoid transmitting hepatitis C to others. For instance, clean up blood spills, cover wounds, don’t share items that can come into contact with blood and don’t donate blood. Sharecare, the Centers for Disease Control and Prevention (CDC) and the HCV Advocate websites have information about hepatitis C transmission. Although this is a potentially infectious disease, do not become obsessed with this. It is rarely passed casually. Learn how to lower the risk, and do your best.
  12. Stay fit. Maintain a healthy weight, choose foods wisely, sleep 7 to 9 hours a night, stay well hydrated, and find a daily exercise program that is reasonable for your capabilities.
  13. Keep copies of your medical records, especially current lab and biopsy results. Carry a card in your wallet or purse listing your medications along with your doctors’ names, addresses, and phone numbers. Smart phones apps are excellent ways to store information, but be sure these are secure.
  14. Start slowly. It can be overwhelming o learn about hepatitis C and to make life-style choices. Take baby steps and build on your successes.
  15. Enjoy life. If depression or anxiety is interfering with your ability to experience pleasure, talk to your doctor or mental health professional. Learn how to manage stress.  Spend time with people who make you happy. Listen to music. Follow the longings of your heart. Keep a positive attitude. Incorporate humor into your daily health practices. If you aren’t happy, learn how to become happy. 

For more information about how to live well with hepatitis C, the HCV Advocate website offers free information, including, “A Guide to Healthy Living with Hepatitis C.”

File under: Expert Spotlight


Lucinda K. Porter, RN

Lucinda K. Porter, RN, author of "Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C", contracted hepatitis C in 1988. Her second book, "Hepatitis C Treatment One Step at a Time: Inspiration and Practical Tips for Successful Treatment", will be released in September 2013. Porter has been devoted to increasing hepatitis C awareness since 1998. She is a member of the Hepatitis C Support Project advisory board and writes for various publications, including HCV Advocate. Porter believes that given support, reliable information and hope, patients are better equipped to manage hepatitis C and its treatment. Her books, blogs and articles offer practical tips, humor and encouragement, guiding patients to live well and free from the burden of hepatitis C. Porter has spoken at TEDxWomen as well as numerous conferences, workshops, webinars, radio shows and podcasts. She is working on a book of daily inspirational readings for those with hepatitis C.

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