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SELF- ADVOCACY PLANNING:  DIAGNOSED WITH HEPATITIS C

It is a very frightening thing to be diagnosed with any chronic health problem. There are so many questions to ask and so many things to find out about the status of your health from your physician. With a hepatitis C diagnosis, you will have the time to think through many of your fears, and you will have the time to develop a good health plan – we call it Self-Advocacy!

Hepatitis C is a very slow, progressive liver disease. It is caused by a virus that entered your blood stream and attacked the liver. This attack causes liver cells to become injured and actually die. More cell death and inflammation from the virus in the liver causes a scarring process called fibrosis, and if left to advance, many people may develop cirrhosis of the liver.

Lifestyle changes will be extremely important in your quest to maintain a good, healthy, and functioning liver. Eliminate all alcoholic beverages! If you have a drinking problem, seek appropriate help. This will be the best thing you can do for your health.

The following is a sample Self-Advocacy Health Plan. You can add to it at any time. Knowledge is power. Knowing all that you can about your liver disease and your health, will help put your mind at ease so that you can go on with your life in an emotionally healthy manner.

  1. After receiving your diagnosis by letter or by telephone, you may have asked someone questions about hepatitis C. In fact, you might not have ever heard of the disease, or have a vague recollection of its name from someone you may know. You will probably be worried at first. Try to maintain an organized focus on what you are about to plan for your health. As a warning, limit the number of people you tell about your diagnosis for two reasons – You may need a confirmatory test to see if you are infected with the virus; there is a lot of stigma associated with viral hepatitis. At this juncture, you are not informed enough to defend yourself due to lack of specific education on transmission. There will be people or groups that you will never tell about your diagnosis. This is okay – remember, you are not your disease!

  2. Make an appointment with a liver specialist, called a gastroenterologist. If you are in an insurance plan called an HMO, you now have the right under California law to request and obtain a referral to one of these specialists. If you can, interview the office by telephone to assure you that the physician has experience in managing patients with hepatitis C. Sometimes you may have to wait several weeks to get in for your appointment. Try not to panic. Hepatitis C is a very slow disease. Use this time to start your education process so that you can be better prepared when you first visit with the specialist.

  3. Identify qualified resources so that you can start receiving materials about hepatitis C. A resource and books to read lists are attached to this Self-Advocacy Plan. This will get you started. The internet is a great source of information. Watch dates on printed materials to make certain that you have current information. Avoid chat rooms and other active areas that make you feel bad emotionally or are frightening in any way. Call the Hepatitis Foundation International and ask to be placed on their PATS list. This will give you a list of people in your area who have hepatitis C and welcome telephone contact from someone else also infected. This is a good way to get support from the privacy of your home. Also ask the Foundation for a list of support groups in your area. You may not be ready to jump in yet – but be prepared. You never know when that list will come in handy at the last moment.

  4. While you are waiting to see the specialist, contact any other physicians that you have seen who would have pertinent health records about you. A copy of these records should be sent to your new physician. Include records from other primary doctors, including any other specialists or psychiatry, including psychologists. A full medical work-up will be in order in the near future. These records will help your new physician get better acquainted with you much faster. Your first appointment will be more valuable to you when both you and your doctor are prepared.

  5. THE BIG DAY HAS ARRIVED! It is often nice to take your partner, spouse, parent, or best friend when attending your appointment. There will be many things covered, such as transmission and prevention. Bring a pencil and paper with all of your questions.

  6. Your new doctor should take a full medical history. Bring any medications with you that you are currently taking, including all over-the-counter medications and supplements. Some medications may be harmful to the liver. Your doctor needs to know all that you are currently taking, or have taken in the recent past year or two. Your doctor will tell you about transmission and risk factors. He/she will ask you directly about any illicit drug use, alcohol use, prescription use, medical illnesses, surgeries, emotional problems, etc. You will be asked about your work exposure and if you have children and are married. So many questions. It is important that you answer all questions accurately, even if the answers are not always comfortable to state.

    If you are taking multiple vitamins, unless indicated that you need additional iron, find a supplement that contains no iron. In addition, make certain that the vitamin A you are taking is only a standard dose in a regular vitamin. Mega-vitamins are not needed and some of the vitamins are fat-soluble which means that your liver could have a hard time processing. Listen closely to your doctor about herbal supplements. They may be harmful to the liver, and if not harmful, may give you a false sense that you are getting rid of the disease the "natural" way. It would be wonderful if we had evidence of a natural remedy that could work against the hepatitis C virus. At this point, there are no known remedies that will eliminate the virus.

    Your doctor should complete a physical exam. Of particular importance will be an exam of the abdomen around the liver and spleen area. A doctor can tell if the liver is enlarged or is firm. These things are noted on your chart and will be explained to you.

    Blood tests will probably be ordered. These tests should include the following: CBC with differential (white cell count, red cell count, hemoglobion, hematocrit, platelet count, neutrophills), Liver Function Tests (total protein, bilirubin, alkaline phosphatase, ALT, AST, TSH (thyroid), alpha feta protein (AFP), Prothrombin time (PT), ANA, PCR. If not run by your primary physician when your hepatitis C blood test was ordered, your new doctor should order a blood test which checks for hepatitis A and hepatitis B antibodies. In addition, an HIV test should be ordered. This would also be a good time for the doctor to order an ultrasound of your liver and spleen. This is a pain-free test, is not invasive, and is performed by a radiology technician. Sometimes this test is substituted for a liver/spleen scan. Either test may be performed later, after laboratory tests are reviewed by you and your doctor.

    Make certain that you have all of your initial questions answered before leaving the doctors office. Tell your new doctor that you would like to have copies of all laboratory test results for your personal records at home. He/she will be glad to help you get these copies. When leaving the office, mention to the girl at the front desk that the doctor said that you could have copies of all lab tests. Let her know how you want to receive them – fax or mail. Schedule your follow-up appointment before leaving the office. You will want to see your doctor in person to review all lab results this first time. Establish a good relationship with the nurse and the people running the doctor’s front office. You will be working a lot with them.

    Well – how do you feel about that first appointment? Did the doctor answer all of your questions? Was the office clean and organized? Did you feel good about the doctor and his practice? If not, there are many other doctors in your area, to be sure.

  7. Between office visits is a good time to understand and be willing to some of the emotional issues you will go through after having a diagnosis like hepatitis C. This process is called the Grief Process. No one is exempt – everyone goes through it a bit differently and in their own time. You may find that you are sad, depressed, and even angry. These are normal emotions. They should pass in time as you come to some level of acceptance and are able to move forward. Do not hesitate to bring your feelings to the attention of someone who cares about you, and certainly to your doctor. If necessary, reach out for a psychologist who understands what grief is all about. You may find that in the process of dealing with one matter, that other problems or concerns are also handled. Wouldn’t that be great!

  8. Your next appointment with the specialist should be to review all laboratory test results. Have questions prepared ahead of time so that you will be organized and get the most efficient use of the doctor’s time. So discouraging to get home and find out that you forgot to ask one of your most important questions. At this visit, find out what your doctor is recommending for an ongoing health plan. Is treatment being considered? Do you have more serious problems? Do you need a liver transplant evaluation? Will your doctor recommend that you have a liver biopsy? Don’t forget – get a photo copy of all of your laboratory test results.

  9. What is a liver biopsy? Do I really need to have one? Will it hurt? Are there risks involved? What will I learn from having a liver biopsy? Can I just be treated without one? These are just a sample of questions you should have for your doctor if he/she is recommending a liver biopsy. So far, the most accurate way of determining the stage of your liver disease and inflammation of your liver, is by taking a small sample of the liver tissue. This procedure is probably not as important if laboratory tests clearly indicate cirrhosis or advanced cirrhosis. What is difficult for you and your doctor to know in those first decades of disease in the absence of advancing cirrhosis, is how much impact the disease has had on your liver over time. Sometimes the disease is so very mild, even after 20 or more years, that both patient and physician are relieved. In other cases, results prompt more serious inquiries into treatment options. Some people should not have a liver biopsy. For example, if you have a tendency to be a "bleeder" as your doctor would determine by a blood test. Refer to the handout attached for liver biopsy information. When electing to have a liver biopsy, make certain the physician doing the biopsy has adequate experience with the procedure, that a local and conscious sedation are used, and that the physician has used some form of ultrasound prior to the biopsy to rule out any unusual body architecture of the adjacent organs, any unique masses, or blood vessel structures called hemangioma.

  10. Most patients want a liver biopsy. In can help to relieve the anxiety of wondering how the liver is doing after having a virus attacking it for so long. It also helps a patient understand the urgency of treatment if being recommended by a physician. Often times, the results are encouraging and the very news helps a patient finalize today’s health plan. Most physicians feel that a liver biopsy is very important, and although some will treat you with interferon without one, these exceptions are not common. It is your decision. Understand both risks and benefits of the procedure. This is a good time to find a support group so that you can ask others about the biopsy. Recently in one of our groups, we actually did an educational and support segment on liver biopsy. With only one exception, everyone stated that they were glad they had the biopsy done and that the anxiety prior to the biopsy was the painful part!

  11. What if your physician recommends treatment? Your physician should talk to you about all of the interferon therapies available and those that may become available in the future. Sometimes, patients can wait if a better therapy is around the corner. Ask him about all of the side effects, costs, required office visits to monitor your health, and resources available to you both in and out of his office to help you through treatment. Take your time to decide. You will want to read more information, talk to others who have been on treatment, attend a local support group, talk with family members, and determine the best timing for you. We have found that doctors are not real good yet at providing community resources without prompting. Make sure to ask. In addition, prioritize the idea of meeting others who have been treated or are currently on treatment. It is much different to meet people than to read the list of side effects which often sounds very frightening. You may be pleasantly surprised that most people are working and carrying on with what they need to do while on treatment.

  12. What if your physician does not recommend treatment? The first question you need to ask is WHY? Is it because he thinks your disease is too mild, or is it because of another health issue that could worsen if you were treated with interferon or interferon+ribavirin. If you are uncomfortable with any answer, you are encouraged to seek a separate opinion from a qualified liver disease specialist. While it is true that not all people need treatment, at least in the near future perhaps, we must also accept the fact that the disease is progressive for almost everyone at some unknown rate for each of us as individuals.

  13. Accepting your physician with confidence will be important in the long haul ahead. You must feel that he/she is supporting you and your health. You must feel that your doctor is informed. It is also important that your physician understands your need to be on top of things and is receptive to faxing or mailing all of your lab tests to you.

  14. Finally, it is important to remember to take care of your entire body. It is easy to worry only about your liver, however, there are other parts that need regular attention – mammograms for women, prostate exams for men, dental checkups, pap smears, etc. And, you should be vaccinated against hepatitis A and hepatitis B.

This health plan is only a template and is intended only to be a starting point for you to develop a solid plan for yourself. First thing – buy a notebook to keep those lab tests. It is important to be portable. It is important to be able to follow your lab test trends. It is important to feel that you are in charge of your health!

© 2003 California Hepatitis Resource Center