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.
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!
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.
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.
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.
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 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.
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!
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.
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.
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!
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
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.
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.
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!