WAYS YOU CAN GET HCV / WHAT IT MEANS TO HAVE HCV / WHAT TO DO / TREATMENT / COMPLEMENTARY/ALTERNATIVE TREATMENTS / LIVER BIOPSY / IF YOU ARE STILL USING DRUGS / REGIONAL AND WEB BASED HEPATITIS RESOURCES |

The following pamphlet has been designed as an insert to "How to Get What You Need: A Resource Guide for People with Chronic/Life Threatening Conditions." If you do not have a copy of this Guide, please contact CCIN (information appears at the end of the pamphlet) for a copy.

There are a variety of types of hepatitis, with the three most common being hepatitis A (HAV), hepatitis B (HBV), and hepatitis C (HCV). This reference guide is for persons who are infected with the chronic form of HCV.

WAYS YOU CAN GET HCV

HCV is transmitted by blood thereby making any of the following possible ways in which you could have been infected:

• received a blood product prior to l992;
• drug sharing/reusing equipment (cookers, needles, cotton, straws etc);
• body piercing and tattooing;
• acupuncture done with unsterlized needles;
• health care workers and others who come in contact with blood through work;
• unprotected sex;
• mother to child during child birth

WHAT IT MEANS TO HAVE HCV

Unlike other forms of hepatitis, where people have obvious symptoms of acute infection, many people with HCV show no signs of being sick, and so they often learn they have HCV after they become ill or it is picked up as part of a routine physical. Unfortunately, most people (85%) who get HCV, will continue to have the virus, making it possible to give it to someone else, as well as possibly making them very ill. Of those who become infected with HCV, 75%-85% will develop chronic disease. Untreated HCV can result in:

• immediate liver inflammation (liver cells heat up and possibly becomes painful);
• fibrosis (scar tissue that forms in the liver after it has been inflamed for awhile) in 10 years;
• 20% will develop cirrhosis (resulting from long periods of inflammation, at this stage the liver has a much harder time filtering blood) in 20 years; and
• 5% will develop liver cancer in 30 years.

HCV is the leading cause of liver transplants in the United States. In addition to liver problems, there are other conditions that are associated with HCV infection. These include: rheumatoid arthritis; fibromylagia; lichen plantus; porphyria cutanea tarda; cryoglobulinemia; vitiligo; membranoproliferative glomerulonephritis; and possibly diabetes.

WHAT TO DO

Lifestyle changes, such as stopping drinking, reducing stress, moderate exercise, medical treatment as well as healthy eating, can go a long way to reduce damage to your body from HCV. If you have been recently diagnosed with HCV, you will want to consider doing the following:

1. Make an appointment and keep it with a health care provider who has experience treating HCV The doctors who generally treat HCV are Gastroenterologists and Hepatologists. In addition, Infectious Disease specialists also provide care to persons with hepatitis. The Fletcher Allen Health Center in Burlington, VT offers services for people with HCV through Gastroenterology and Infectious Disease. Call 800//358-1144. The Dartmouth Hitchcock Medical Center (DHMC), in W. Lebanon, NH provides HCV services through Gastroenterology 603/650-5261 and Infectious Disease 603/650-5050. If you are looking for a specialist closer to your home, you might consider contacting one of the programs listed above for a local referral. There are also hepatitis programs in Boston, MA and in Albany, NY.
2. Ask to know all test results including genotype, viral load, and liver enzyme levels.
   • Alanine Aminotransferase (ALT) is one of several liver enzymes. Persistent elevation of the ALT in your blood indicates that your liver may be inflamed. However, the only way you can be sure what is happening to your liver is through a liver biopsy.
   • Genotype is the type of virus you have. There are six types of HCV, with a number of sub types. The most frequent form in the United States is 1A or 1B. It is important that you know what type of HCV you have as it will effect aspects of your treatment.
   • Viral load indicates how much HCV virus you have in your blood.
3. Be tested for HIV, the virus that causes AIDS. HCV and HIV are both transmitted in the same manner and so you need to make sure that you do not have HIV. There are many places where you can go for a free anonymous test. There is now a saliva test (Orasure), so it is very quick and easy. To learn more about HIV testing, and where you can go, contact 800/882-2437 in Vermont and 800/752-2437 in NH.
4. Get a blood test to see if you are already immune to Hepatitis A and B. If you are not immune, be vaccinated. Getting either of these additional forms of hepatitis could make you very ill and possibly cause death.
5. Consider having a liver biopsy. While blood work can give some ideas of what might be going on with your liver, the only way you will know if your liver has been damaged is by a liver biopsy. (see section below on liver biopsy).
6. Avoid the following as they could harm your liver
   • Alcohol-Very toxic to the liver (stopping drinking is one of the best things you can do for your liver)
   • Caffeine: chocolate and coffee
   • Vitamins A & D supplements-do not take mega vitamins without checking with your provider
   • Smoking

   • The following herbs:

     Plants of Senecio, Crotalaria and Heliotopium families, chaparral, mistletoe, senna, Gordolobo, yerba tea, germander, skullcap, margosa oil, peppermint, valerian, hops, gentian, groundsel, asfetida, mate tea, sassafras, comfrey, Jin Bu Huan, pennyroyal oil, mushrooms (Amanita & lepiota helveotia).

   If you have advanced liver disease, you will also want to avoid foods with high fat/salt/sugar content: processed foods –canned or frozen, chips, fast food, bacon, sausage, cold cuts, cheeses, Chinese food and pickles- scavenger fish, shellfish, raw fish

   Pain relievers, such as Acetaminophen (Tylenol) and ibuprofen (Advil) can be problematic in people with liver disease, therefore, check with your provider before taking them.

7. Adopt a healthy lifestyle which includes eating well, getting clean and sober, moderate exercise, relaxation, stress reduction.

8. Avoid infecting others by:
   • Not sharing/reusing drug equipment (needles, cookers, cotton, straws etc.).
   • Practicing safer sex (use of condoms and other barriers so that partner does not come in contact with bodily fluids), particularly if you have multiple partners. There are differing opinions about the need for practicing safer sex, particularly if you are in a monogamous relationship (only having sex with one person). Keep in mind that HCV is in the blood, so reduce any activity which could bring your partner in contact with your blood.
   • Making sure that sterilized equipment is being used for tattooing, body piercing, or acupuncture
   • Not donating blood, plasma, body organs, other tissue or sperm.
   • Not sharing tooth brushes, razors, or other items that could become contaminated with blood.
   • Covering open sores or other breaks in the skin.

   Don't avoid normal social and work contact. Hugging, kissing, shaking hands, eating and preparing food ARE safe.

9. Consider treatment, particularly if your liver enzymes are elevated for longer than 6 months and there is mild to moderate disease.
10. See your provider every 6-12 months for regular blood work and evaluation, if no sign of liver problems is present. If liver problems exist, keep all appointments.
11. Be in charge of your healthcare. Be sure and read Sections 1-3 of the How To Guide to learn ways to protect yourself from fraud, how to talk to your provider, where are some of the best sources of information, and most importantly, how to ask for what you need.
12. Check with your doctor before taking any medications or alternative therapies. They will be able to tell you what could effect your liver.
13. Talk to others who are living with HCV. Consider joining a support group, not only to learn more about your disease, but you will have a community that can support you. A list of support groups in the twin state region appear in the resource section of this pamphlet.
14. Tell those who need to know about your HCV status. These people should include:
    • medical and dental providers
    • sex partners
    • drug using partners

You do not need to tell family members, friends, co-workers, or employers. However, do find friends/family that can be supportive of you.

TREATMENT

While there are a variety of studies being done, and new drugs being tried, the current thinking is that a combination of alpha interferon and ribavirin can rid the body of the virus in about half of the people who try the medication. Alpha interferon, an injectable drug, can be done daily, three times a week, or once a week (peglyated form). Ribavirin is taken daily. Depending on the subtype (genotype) of HCV you have, and how well you respond to initial treatment, you may need to take the combination therapy, as it is called, for as long as a year.

There can be side effects from the treatment, most particularly depression. Many providers will prescribe anti depressants as part of the treatment plan. Other side effects of the medication include fatigue (very tired), nausea and other flu like symptoms, including muscle aches. You can also develop anemia. How you respond to treatment will depend on your body. Some people have no side effects while others are very ill and find they can’t do anything while they are on treatment. You need to discuss this with your provider before you start the combination therapy.

The treatment for HCV can cause birth defects in unborn children, therefore, women of child bearing age, who are on combination therapy, may be prescribed birth control and are advised to wait six months after stopping treatment before becoming pregnant.

COMPLEMENTARY/ALTERNATIVE TREATMENTS

While there are no treatments, other than the combination therapy described above, that removes HCV virus from the body, many people feel they are helped by using a regiment of vitamins and supplements. Along with acupuncture, yoga, diet changes, moderate exercise, meditation, and stress reduction, these options can be done in conjunction with combination therapy (complementary) or in place of (alternative therapy). Some of the most common forms are Milk thistle (Silymarin), which does reduce inflammation, astragalus, dandelion, bupleurum, garlic, licorice root, and vitamin E (warning more than 800 mg/day can be toxic), artichoke, and alpha-lipoic acid. If you decide to use complementary or alternative therapies, please let your provider know so they can be supportive of what you feel may work best for you.

LIVER BIOPSY

While blood work, and physical exam, gives some idea of what the HCV may be doing in your body, the only way to know for sure what’s going on with your liver is by doing a biopsy. The results of this procedure can tell the stage of disease, the condition of your liver and how you may progress in the future. If you are starting treatment, some providers will not bother with a biopsy, only doing one if the treatment fails. You do not need a biopsy to be treated for HCV.

A liver biopsy is most frequently obtained by inserting a needle into the liver for a fraction of a second. Risks are very low, with bleeding from the site of needle entry being the primary complication. However, this occurs in less than 1% of patients. While a safe procedure, it is important to discuss potential risks and benefits in detail with your provider.

Liver biopsy is generally done under local anesthetic as a same day procedure. It should not be painful. It is important to note that a history of substance abuse may require you to have more anesthetic. Only you know your pain threshold. If you require more anesthetic for dental work than most people, you’re going to need it for the biopsy. Talk to the doctor before the procedure so that both of you are clear about what type of anesthesia you may require.

There may be some pain afterwards, however in approximately half of the patients there is none. You may experience a short localized pain that may spread to the right shoulder, or possibly in the pit of your stomach. If you need it, the doctor can provide a light painkiller immediately after the biopsy. You will be monitored for several hours after the biopsy, to assure there is no serious bleeding. You may experience a sudden drop in blood pressure.

Peoples fear of the biopsy is generally much worse than anything that happens during the procedure.

IF YOU ARE STILL USING DRUGS

Regardless of your HCV status, there is lot you can do to help yourself. If you can, get clean using detox, rehab, 12 step, methadone maintenance, support group or other type of program. Getting help is hard work so find someone that you trust and who is willing to help you through the changes. The How To Guide lists a substance abuse treatment programs which may be something you want to consider.

If you are not able to get clean, don’t share your works, as HCV is easily transmitted and you could infect someone else. Besides, if you don’t have HIV, you don’t want to complicate things by becoming co-infected with HIV or another disease.

REGIONAL AND WEB BASED HEPATITIS RESOURCES

Support Groups

New Hampshire

Keene
3rd Wed of every month 7 pm
Family and Friends welcome
Cheshire Medical Center
Marianne Parisi 603/354-5467

Laconia
Lakes Regional General Healthcare
80 Highland St.
Laconia, NH 03246
Offer a peer for persons who are newly diagnosed with HCV
Contact: Susan Irving or Darlene Burrows 603/527-2825 or 603/524-3211 ext. 3041

Manchester
2nd Tuesday of every month,7:00 PM
Nursing Home Care Unit Solarium
Veterans Administration Hospital
Smyth Road Manchester NH
Free, open to the public
Contact person: Maria Gavin 1-800-892-8384,ext.6193

Upper Valley (Hanover, Lebanon, White River Junction area)
VA Hospital in White River Junction
Yasinski Research Bldg. Rm 129
Hepatitis Eduction/Support Group
Open to the Public
3rd Thursday of every month from 6:30-8PM
Contact Mary Chaffee (802)296-5191 or hepccmary@hotmail.com

Dartmouth Hitchcock Medical Center
1st Tuesday of the month 4-6 PM
Conference room L3a (inquire at the Rotunda)
Contact/Facilitators: Leane Matchem, RN; Kim Wood, RN; Cathy Ferraro, RN
603-650-6094

Vermont

Brattleboro
1st and 3rd Monday of every month from 7:00 pm to 8:30 pm.
Brattleboro Memorial Hospital
Conference Room B
Contact: Jay Sabine, 802 257 7592 after 5:00 pm.

Burlington
2nd Thursday of the month, 6:30-8 PM
McClure Multi-Generational Center
241 North Winooski Ave., Burlington
Contact: Cris Zern, 802/223-5986
criszern@aol.com

Rutland:
Hepatitis & Liver Support
Rutland Regional Medical Center
5th Floor
Library 6:30 to 8:00
3rd Wednesday of every month
call Pat 802.773.2313
e-mail: Apam037@aol.com

Upper Valley (Hanover, Lebanon, White River Junction area)
VA Hospital in White River Junction
Yasinski Research Bldg. Rm 129
Hepatitis Education/Support Group
Open to the Public
3rd Thursday of every month from 6:30-8PM
Contact Mary Chaffee (802)296-5191 or hepccmary@hotmail.com

Dartmouth Hitchcock Medical Center
1st Tuesday of the month 4-6 PM
Conference room L3a (inquire at the Rotunda)
Contact/Facilitators: Leane Matchem, RN; Kim Wood, RN; Cathy Ferraro, RN
603-650-6094

Vermont Hepatitis Support Network: Contact Cris Zern, 802/223-5986 or criszern@aol.com

Web Sites

CCIN (Chronic Conditions Information Network) Hepatitis page

American Association for the Study of Liver Diseases (AASLD):

American Liver Foundation

Be In Charge

Canadian Liver Foundation

Centers for Disease Control Hepatitis

HCV Advocates

HCV Global Fun

HIV and Hepatitis.com

NATAP

National Institute of Diabetes, Digestive and Kidney Disorders

Office of Dietary Supplements (part of NIH)

Rebetron

Questions

Johns Hopkins Viral Hepatitis Page

Dr. Dietrich at The Body

Chronic Conditions Information Network (CCIN) assists those who live or care for those with chornic conditions so that they are able to obtain accurate and relevant information in a timely manner.
PO Box 3 Cavendish, VT 05142 802/226-7807 ccin@cc-info.net