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Help for Patients & Caregivers
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Help for Patients and Caregivers : Hepatitis C
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What is
Hepatitis C?
Common
Symptoms
What Causes Hepatitis C?
Treatments
Surgical Treatment
Hepatitis C Well-Being
Additional Information
What is Hepatitis C?
HCV (Hepatitis C Virus) is an inflammation of the liver causing
soreness and swelling. It is the most common chronic blood borne infection
in the United States. The hepatitis C virus usually is transmitted through
contact with infected blood, most commonly by sharing needles during intravenous
drug use, or getting a blood transfusion before 1992. Hepatitis C also
may be spread through unprotected sexual intercourse, but this is uncommon.
Most people don't feel sick when they are first infected with hepatitis
C. Instead, the virus stays in their liver and causes chronic liver inflammation.
- HCV is one of the most common causes of chronic liver disease in the
United States
- If the inflammation is not reversed, it becomes chronic (ongoing,
long term) and can cause chronic liver disease, which can be serious
or even fatal.
- At least 75% of people infected with hepatitis C develop chronic hepatitis
C.
- If the disease progresses to the point at which the liver begins to
fail (end stage liver disease), the only treatment is liver transplantation.
- About 4 million people in the United States have antibodies to HCV,
meaning they have been infected with the virus at some point; as many
as half of them do not know they have the infection.
Common Symptoms?
Symptoms of hepatitis B or C include headache, nausea, vomiting, abdominal
pain, jaundice (the skin turns yellow), weakness and fatigue. Bowel movements
may be gray in color. The urine may be dark and look like tea. Sometimes,
though, hepatitis is a mild illness. If you have a mild case of hepatitis,
you may not even realize that you have it. It may not cause symptoms or
may only cause symptoms similar to the stomach flu. You might think you
have the flu, and not know you have hepatitis.
- Chronic hepatitis C can lead to Cirrhosis of the liver
in many people, a condition traditionally associated with alcoholism.
Symptoms of cirrhosis include the following:
- Fluid retention causing swelling of the belly (ascites), legs, or
whole body
- Persistent jaundice
- Fatigue
- Disturbances in sleeping
- Itchy skin
- Loss of appetite, weight loss, wasting
- Vomiting with blood in the vomit
- Mental disturbances such as confusion, lethargy, extreme sleepiness,
or hallucinations (hepatic encephalopathy)
What Causes
Hepatitis C?
Hepatitis C is mainly transmitted by contact with blood or blood products.
Many times, the cause of hepatitis C is never found.
- Sharing of contaminated needles among intravenous (IV) drug users
is the most common mode of transmission. Using a needle to inject drugs,
even just once many years ago, is a risk factor for hepatitis C.
- Many people contracted hepatitis C through blood transfusions. Since
1992, however, screening tests to check for hepatitis C in donated blood
have decreased the chance of getting the virus.
- Extremely rare transmission modes include from mother to child during
birth, sexual intercourse (particularly if sexually active with more
than 1 partner), and accidental needle sticks from a needle used by
someone infected with HCV. Other possible modes include manicures, haircuts,
razors, toothbrush, and tattoos, but these are unlikely.
- Received blood, blood products, or solid organs from a donor who has
hepatitis C
- Have been on long-term kidney dialysis
- Have had frequent workplace contact with blood (for instance, as
a healthcare worker)
Treatment for
Hepatitis C
Combination therapy with Interferon and Ribavirin is the treatment of
choice resulting in sustained response rates of 40%-80%. (up to 50% for
patients infected with the most common genotype found in the U.S. [genotype
1] and up to 80% for patients infected with genotypes 2 or 3). Interferon
monotherapy is generally reserved for patients in whom Ribavirin is contraindicated.
Ribavirin, when used alone, does not work. Combination therapy using interferon
and ribavirin is now FDA approved for the use in children aged 3-17 years.
What are the side effects of interferon therapy?
Most persons have flu-like symptoms (fever, chills, headache, muscle
and joint aches, fast heart rate) early in treatment, but these lessen
with continued treatment. Later side effects may include tiredness, hair
loss, low blood count, trouble with thinking, moodiness, and depression.
Severe side effects are rare (seen in less than 2 out of 100 persons).
These include thyroid disease, depression with suicidal thoughts, seizures,
acute heart or kidney failure, eye and lung problems, hearing loss, and
blood infection. Although rare, deaths have occurred due to liver failure
or blood infection, mostly in persons with cirrhosis. An important side
effect of interferon is worsening of liver disease with treatment, which
can be severe and even fatal. Interferon dosage must be reduced in up
to 40 out of 100 persons because of severity of side effects, and treatment
must be stopped in up to 15 out of 100 persons. Pregnant women should
not be treated with interferon.
What are the side effects of combination (ribavirin + interferon)
treatment?
In addition to the side effects due to interferon described above, ribavirin
can cause serious anemia (low red blood cell count) and can be a serious
problem for persons with conditions that cause anemia, such as kidney
failure. In these persons, combination therapy should be avoided or attempts
should be made to correct the anemia. Anemia caused by ribavirin can be
life-threatening for persons with certain types of heart or blood vessel
disease. Ribavirin causes birth defects and pregnancy should be avoided
during treatment. Patients and their healthcare providers should carefully
review the product manufacturer information prior to treatment.
Surgical
Treatment
- For end-stage liver disease, the only treatment that will cure the
problem is liver transplantation.
Hepatitis C Well-Being
Follow all instructions that your health care provider gives you. A healthy
lifestyle is more important than ever.
- Eat a varied, healthy diet, take it easy, and get plenty of rest.
- Drink plenty of fluids to prevent dehydration.
- Do not drink alcohol of any kind, including beer, wine, and hard
liquor.
- Avoid medicines and substances that can cause harm to the liver such
as acetaminophen (Advil, Aleve, Ibuprofen, Tylenol) and other preparations
that contain acetaminophen.
- Avoid prolonged, vigorous exercise until symptoms start to improve.
The better you take care of yourself, the more likely you will be one
of the many individuals who do well for many years.
Additional Information
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Hepatitis Foundation
International (HFI)
504 Blick Drive
Silver Spring, MD 20904-2901
Phone: 1-800-891-0707
or (301) 622-4200
Email: hfi@comcast.net
Internet: www.hepfi.org
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10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down so you won’t forget them
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
- Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with “why.”
- Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.
What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:
- Gathering information from healthcare providers;
- An assessment of your care recipient and the home environment;
- Research into available public and/or private services and resources to meet your loved one’s needs; and
- Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.
Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.
Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.
Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.
Write down your observations of the present situation including:
- Your loved one’s ability to function independently, both physically and mentally.
- The availability of family and/or friends to form a support network to share the care.
- The physical environment: Is it accessible or can it be adapted at reasonable cost?
- Your other responsibilities — at work, at home, and in the community.
- Your own health and physical abilities.
- Your financial resources, available insurance, and existence of healthcare or end-of-life documents.
This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.
Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.
Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.
Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?
Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.
Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.
Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.
Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.
How do you care for your mobility device?
The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.
When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
Additional Resources
It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.
Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org
The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.
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