By Kathy Jensen, LCSW
You’ve been doing your homework, getting medical opinions, reading everything you can find, attending support groups and have made your decision: I’m going to do treatment!
Be honest. Children and adolescents need different approaches based on their age, maturity, and coping abilities, but they all need to know what is happening. If you don’t share openly, they can still sense that something is up, and usually they imagine the worst. Trying to “spare” them any pain can often backfire.
Give them facts appropriate for their age. It is common for children to believe that they somehow caused your illness or have made it worse through something they did or secretly wished in their own moments of anger or frustration. If you have never discussed your diagnosis with them, this is the time to give them some information.
Tell them enough but not more than they need. Find language that they can understand. I once heard someone explain a healthy liver as a “brand new sponge, that is soft and easily soaks up water. As the liver has scarring, the sponge feels hard and doesn’t work as well as it did when it was new. The medicine I am going to take will help my liver be soft and smooth again.” Be positive and hopeful.
Listen carefully. What are their questions? They can be as awesome as “Are you going to die?” to “Does this mean I can’t go to Danny’s birthday party next week?”
Reassure them that they are loved and will always be taken care of, and that you will keep them informed. “Mommy is strong, and we are doing everything possible to cure the disease.”
Tell them about the treatment and how you might be feeling from side effects. Encourage a discussion about how they might be able to help you, such as little (or big, depending on their age) chores they can take on. Stress that this will not last forever but may last 6 months to a year. For younger kids, putting together a box of quiet activities they can enjoy while you are resting can be a way to have them involved in your planning.
Watch and see how they handle it. Adolescents can sometimes have a very hard time with a parent’s illness. They are trying to move away from you, and now you may have to depend on them. This can create some challenges. Try to keep the communication open. Don’t be afraid to share your feelings with a teen: “This really makes me angry, sad, and scared too, but I know we can get through it okay.”
Signs that your child is not coping well, include: (symptoms lasting more than a few weeks)
Marked change in personality and mood
Decreased appetite
Acting out at home or school
Withdrawal from you, friends or normal activities
Physical complaints like headaches and stomachaches
If you are concerned, talk to your child’s doctor, teacher, school counselor, etc.
Hearing for the first time that you have been diagnosed with hepatitis C
can be a very difficult and frightening experience, not only for yourself,
but also for others who play an important role in your life. It may be
helpful for you to discuss your diagnosis with those who are close to you.
Should you decide to talk to your family or other people close to you
about your diagnosis with hepatitis C, it may not be easy. But once they
know, they may be able to provide you with the help and support you
need to manage your illness in the best way possible.
You may want to:
◆ Explain what hepatitis C is and how it is spread.
◆ Talk about ways you can help protect them and how they can
protect themselves from getting hepatitis C.
◆ Share information with your children that is appropriate for their
age. Give them only the information they need.
◆ Have a friend or family member go with you to your medical
appointments.
OTHER HELPFUL INFORMATION
How do I cope with my feelings?
Being diagnosed with an illness like hepatitis C can be an overwhelming
experience. You may feel scared, sad, angry, tired, or even empty inside.
You may lose interest in things that are important to you. These feelings
are quite common, and can fade with time, treatment, and support from
others. When these feelings do not go away, become stronger, or keep
you from doing your daily activities, you may be experiencing signs of
a more serious condition called depression. Try talking about your sad
and angry feelings to your family members and friends. And let your
health care provider know about these feelings so that you get the help
you may need.
ASKING THE RIGHT QUESTIONS
These questions may help you communicate with your
health care providers and manage your illness. Some questions may not
apply to your specific situation, or some questions may be appropriate
to ask at a later time. These questions are not a complete list, and are
meant only to guide you in your discussions with your providers. You
may find it helpful to take this booklet with you to your appointment
and record answers to the questions you ask.
Questions About a Health Care Provider’s
Experience with Hepatitis C:
◆ Do you have many other patients with hepatitis C?
◆ Do you feel up-to-date on all the latest changes and advancements
in hepatitis C treatment?
◆ Do you think I should be referred to a liver specialist for my care?
Questions About Testing:
The following questions relate to routine and one-time liver tests:
◆ What is my hepatitis C viral load?
– (If you have already gotten a viral load test)
What are the test results?
– How often should I have my viral load checked?
– May I have a copy of the test results for my records?
What is my hepatitis C genotype?
(This is a one-time liver test)
– (If you have already gotten a genotype test) What are the test results?
– How does my genotype affect my illness and possible treatment?
– May I have a copy of the test results for my records?
◆ What are my liver function test levels?
(Liver function tests are ALT/
AST,ALP, and SGTP, bilirubin, albumin, and prothrombin time)
– (If you have already gotten liver function tests)
What are the test results?
How do they compare with normal levels?
– How often should I have liver function tests done?
– May I have a copy of the test results for my records?
◆ Do you recommend I have a liver biopsy?
– If yes, why? If no, why not?
– What is involved in getting a biopsy?
• What are the risks?
• How is the procedure performed?
• How long does the procedure take?
– What experience do you have, or does the doctor performing the
procedure have in doing liver biopsies?
(The more experience they have, the better.)
– If a liver biopsy shows that I have fibrosis or cirrhosis (scarring),
how does that affect my treatment options?
– (If you have already gotten a biopsy)
What are the results of my liver biopsy and what does it mean?
Will the result affect my treatment?
– May I have a copy of the biopsy report for my records?
Questions About Medical Treatment
(if you are on treatment or thinking about treatment)
◆ Do you feel I am a good candidate for interferon and ribavirin
combination therapy?
What about pegylated (peg-a-lated)
interferon therapy?
Or should I wait for the new Oral Inhibitors such as Telaprevir or Boceprevir to be FDA approved ?
These new drugs will be used with pegylated interferon/Ribavirin and increase your chance for a cure with a possible shorter treatment duration. These drugs have a higher success SVR rate with genotype 1, which is the most difficult genotype to treat.
Whould this increase my chances for a cure ?
– If so, why?
– If not, why?
– What will happen if I decide to wait to start treatment?
◆ What are the pros and cons of beginning treatment?
– What are the potential side effects of the interferon and ribavirin,
pegylated interferon or when adding the new oral inhibitors ?
How long do you think I will have to be on therapy?
– How is the treatment taken?
– How may the treatment affect my life and my lifestyle?
– What is the likelihood that the treatment will be successful?
– Do I have to change how or when I eat if I choose to be treated?
– Should my partner or I take birth control pills while on the
medications?
– Can my partner (or I) get pregnant safely while I am on the
medications?
◆ If I have a history of mental health issues (depression/anxiety), will I
be a candidate for hepatitis C treatment?
– How will my mental health be managed?
– What will be done if my mental health gets worse?
Hepatitis C Self Care:
◆ How does my diet affect the hepatitis C virus?
– Do I have to change how and when I eat now that I have hepatitis C?
– May I be referred to a dietitian or nutritionist for help with my
dietary needs?
◆ How do my social habits (drinking alcohol, using drugs, smoking)
affect my liver or the hepatitis C virus?
◆ Do I need to stop drinking alcohol completely?
◆ If I want to stop using alcohol and/or other drugs, can you refer me
to an alcohol and drug counselor?
◆ If I want to stop smoking, can you refer me to someone to help me quit?
◆ Do I have to change my sexual practices? Should my partner(s) and
children be tested?
◆ What kinds of symptoms/signs can I expect now that I have been
diagnosed with hepatitis C?
◆ What if I feel fine? Does that mean my liver is not damaged?
◆ Do you recommend that I have tests done to see about the condition
of my liver? If yes, which tests?
◆ Do you recommend that I begin treatment for hepatitis C? If yes,
which treatment do you recommend and why?
◆ Is there a support group in the area that I can attend?
Other Infections:
◆ Do I need to be tested to see if I am immune to hepatitis A and/or
hepatitis B?
◆ Am I immune to hepatitis A and/or hepatitis B? If not, do you
recommend I be vaccinated for either or both hepatitis A and B viruses?
◆ Should I be tested for HIV or other infections?
Questions About Follow-Up Care:
◆ How often should I return for follow-up?
◆ Can I schedule an appointment now?
◆ What should I do if my health gets worse between now and the next
time I see you?
– Can I call your office and make an earlier appointment?
◆ Are you available by phone and/or email?
http://hepc-connection.org/Documents/LivingWithHEPCBooklet2010.pdf
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