First Steps – Just Diagnosed

(1) Get re-tested to confirm the diagnosis. The first test (for antibodies) just shows if you have ever been exposed. A second test (PCR) is needed to confirm whether the virus is active. If it isn’t active, you do not have hepatitis C, and do not need any further tests or treatment. If the virus is active, you do have hepatitis C (are HCV+), and should follow these steps:

(2) Get informed – educate yourself such as by reading pamphlets and websites of HepCBC, CATIE, and the Canadian Liver Foundation.

(3) Ask your health service provider what your Stage (degree) of Liver Damage is. This is usually determined through non-invasive testing such as Fibroscan, Fibrosure, or APRI. Sometimes it is also done through a more invasive test called a liver biopsy (done through needle aspiration).

(4) Ask your health service provider what your hepatitis C “Genotype” is.  If they don’t know, request genotype testing. Treatment options may be based on your HCV genotype.

(5) Ask your health service provider to vaccinate you against hepatitis A and B.  Getting one of these on top of your hepatitis C could make you extremely ill.

(6) Discuss treatment options with your health service provider. Throughout the world, family doctors and even nurse practitioners are starting to treat hepatitis C patients, though they will consult with a specialist if difficulties or questions come up.

• Get a second or even a third opinion if you don’t agree.

(7) Get copies of all tests. You have the right to these. Keep them in a binder.

(8) Your health service provider may 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). This is because:

• 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.

(9) Your health service provider may also order these tests following your diagnosis, or to monitor your health during and even after your treatment.

• An ultrasound of your liver (usually people with cirrhosis do this every 6 months) to detect abnormalities and cancers at an early stage.
• Various blood tests including ALT (test for enzymes which show liver-damage) and an annual AFT (alpha-feto-protein test – a possible indicator of liver cancer). See Tests and Results section for more information.

(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 a public health nurse, a family doctor, Nurse Practitioner, or a health clinic general practitioner discovers that a patient has hepatitis C (is HCV+), and then they must decide how long to simply monitor the patient’s progress, if/when to treat, and if/when to involve a specialist in the patient’s HCV-related care.
• 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, many of them also come under the care of a Hepatology Nurse or a Nurse Practitioner specialized in hepatology, who provides them with the expert support they need during this difficult time, thereby freeing up physicians and specialists to deal with their increasing HCV+ patient load.