(1) Get re-tested to confirm the diagnosis.
(2) Get informed (see Educate Yourself and Others).
(3) Find a local or online peer support group. (If in doubt, call HepCBC office at +1-250-595-3892).
(4) Ask your doctor what your Genotype is. If the doctor doesn’t know, ask for genotype testing. This is important because your future treatment (no matter if Standard of Care or an experimental trial) is based on your HCV genotype.
(5) Ask your doctor to vaccinate you against hepatitis A and B. Getting one of these on top of your hepatitis C could make you extremely ill.
(6) Get copies of all tests. You have the right to these. Keep them in a binder.
(7) Insist that your doctor refer you to a hepatitis C specialist (SEE BELOW*), even if you have NO SYMPTOMS or NORMAL TEST RESULTS (such as normal ultrasound or ALT).
- Life-threatening but hidden damage can occur before symptoms or abnormal test results. HCV damage is often ‘silent’. Suddenly a person may discover they are bleeding internally, have cirrhosis or liver cancer, or that their liver is so damaged they will require a liver transplant to survive. The waiting list for a transplant is long.
- Early treatment is more likely to be successful, and will help prevent further damage to your body or the chance of transmission to others.
(8) Make sure your hepatitis C specialist orders all of these tests:
- Order an ultrasound of your liver yearly, if your family doctor didn’t.
- Order an alphafetoprotein test yearly along with your normal hepatitis C blood panel. See Tests and Results section for more information.
- Order a liver biopsy. (This is usually done by needle aspiration, but there are other non-invasive options if there is a bleeding problem, for example). Ask your doctor about availability of non-invasive testing such as Fibroscan, Fibrosure, or APRI.
(9) Discuss treatment options with your hepatitis C specialist.
- Get a second or even a third opinion if you don’t agree.
- Ask your hepatitis C specialist if you should get tested for the IL28B gene. Presence of this gene sometimes can predict the chance of success for a particular treatment. Research on this gene is ongoing, and for some genotypes or treatments, the IL28B gene may not be important.
(10) Take steps to prevent additional liver damage. Liver damage can be reversed, but it takes much longer when the damage is severe.
- If you drink alcohol, stop. Alcohol – even in small amounts – when combined with hepatitis C, will dramatically hasten liver damage. If stopping is difficult for you, don’t hesitate to ask for help. Now that you know you are HCV+, this important decision could save your life.
- If you take ANY supplements, vitamins, or drugs (no matter if “recreational”, above-counter, or prescription) you should ask your doctor if they are safe for a person with a compromised liver. You may need to change dosage or switch to a more liver-friendly medication, or simply quit using it altogether. You may have to phase out gradually. Be sure not to change medications without consulting your doctor.
- If you smoke, you can give your body a much better chance by quitting. Now is the perfect time to ask your doctor for assistance. Smoking can further stress your heart, lungs, skin, muscles, and immune system as well as your liver.
- Everything you breathe in or put on your skin eventually ends up in your blood and gets filtered through your liver. Soaps, lotions, household cleaners, glues, solvents, dyes, oils, paints, and industrial products all contain chemicals and other poisonous substances which can stress and further damage your liver. Use the most liver-friendly products you can, and don’t hesitate to wear a mask and gloves when handling such products.
- Now is also the perfect time to start an exercise program. Both aerobic and weight-bearing exercise are excellent for strengthening the parts of your body that HCV weakens. Exercise will even help reverse some damage, and will improve your chances of being successfully treated for HCV. Ask your doctor for advice.
*What is a hepatitis C specialist?
- Generally family doctors or health clinic general practitioners discover that a patient is HCV+, and then they must decide how long to simply monitor the patient’s progress before turning over the patient’s HCV-related care to a specialist.
- Physicians who become HCV specialists include Hepatologists, Gastroenterologists, Infectious Disease Specialists, and a few General Practitioners working in urban centres whose patient base contains a high concentration of HCV+ individuals.
- When patients are undergoing treatment, most of them also come under the care of a Hepatology Nurse, who provides them with the support they need during this difficult time, thereby freeing up the physician-specialists to deal with their increasing HCV+ patient load.