American Liver Foundation
180 N. Michigan Ave., #1870
Facts and Statistics
Liver and biliary diseases affect one in every ten people.
Women appear to be more likely to suffer liver damage from alcohol than do men.
Fundraising & Administrative Percentage
Being the Caregiver for someone going through HCV Treatment
The difficulty begins even before being diagnosed. Because HCV is not regularly screened by primary care doctors, it can take years to be diagnosed. Elevated liver enzymes, and fatigue, can be indicators for the virus, and a simple blood test can be done to check for the virus. Primary care doctors must be vigilant for these indicators, and suggest a blood test. If the person is positive then a further test must be done to determine the genotype, and subsequent treatment options.
The hardest part about living with a person suffering from HCV and going through treatment, is not understanding the disease, its complications, not knowing how to get rid of it, and dealing with the stigma of having a communicable disease. We went through a stage of only telling family and close friends about having the disease. Even though we learned that HCV is only transferred by blood to blood contact, and there are many things we can do to protect against transmission, other people may not have that information and be afraid to talk to us. My husband voluntarily quit working in the Church Nursery so that no one would have to worry about him putting the children at risk. Since we have become more vocal about HCV, we feel like a dark cloud has been lifted. This is the way to educate the whole community, to eradicate the stigma.
Educating ourselves about HCV, the method of transmission, available treatments, and talking to other people with HCV, has been invaluable for our family. Attending The American Liver Foundation Support Groups held at various hospitals and other locations around the Chicago area and suburbs was the first step in our education. Patients and their family members are encouraged to attend these confidential meetings to learn more about the virus, treatment, healthy lifestyle changes to deal with the virus and/or treatment, and medical and alternative interventions available. These support groups are helpful for the patients because they can talk to others going through the same experiences. It is also helpful for the Caregiver to understand what the patients are feeling, and learn ways to deal with the virus and treatment side effects. These Support Groups have become a regular part of our life.
Support from the American Liver Foundation meetings, and its field representatives helped us through the tough times on the treatment. It helped us to stay on the treatment plan, and deal with the side effects of the powerful drugs taken to eliminate the virus. Some people have a hard time taking a 10 day course of antibiotics, and we had to commit to an eleven month (or more) program. We learned ways to minimize the effect of the treatment on our family, so that our children�s lives wouldn�t be drastically changed.
One of the side effects of the shots taken weekly is that the patient can become moody, non-social and irritable. We would schedule the shots late in the evening so that my husband could sleep off many of the initial side effects, and have the next day and a half or two days with minimum outside contact until he felt more comfortable being around people. When he felt like interacting with others, it was under his initiative. Vacations were scheduled so that the children would have fun interacting with family members, and my husband could join in when he felt able. This was very difficult for the family because normally my husband was very active in our family activities, and though the anti-depressants he took did help somewhat, his family involvement was at a minimum. As caregiver, I made sure that the children�s lives continued as normal as possible, but there were times when I felt like I was a single parent, since my partner was emotionally and physically unavailable.
The skin problems from the treatment also caused much discomfort for my husband. He got rashes on his face, red spots on his legs and felt itchy all of the time. Our ALF representative suggested Fish oil capsules, Vitamin E, lotions and steroid cream, to reduce the irritation. Sam E and milk thistle, a healthy diet, eliminating caffeine, exercise, helped to promote regeneration of the liver. As Caregiver, I was too busy working with the children to help my husband with his daily regimen of pharmaceuticals and over-the-counter drugs, but I suggested a daily log to help him keep track of all of the pills, and shots.
The treatment can cause a patient to become forgetful, and �foggy.� I would often feel like he wasn�t listening, so I would repeat myself and write things down. When I got to a point where communication was almost non-existent, we did discuss going to a marriage councilor. But I didn�t want to discuss the problems with anyone because I knew that most of the problems were caused by the treatment. The man I lived with wasn�t the man I had married. My objective was to get our family through the treatment, and then when it was over if we still needed counseling, we would go. My husband�s normal personality returned after ending treatment, and we are stronger from our experience.
Now one of the things that brings us even closer is our desire to get the word out about HCV, and other liver diseases. The National Center for Disease Control predicts that the number of HCV deaths will surpass those of HIV within 10 years. This is mostly due to the fact that people are unaware that they have HCV until there is too much liver damage. Knowledge and education can eliminate the stigma of having the virus, and testing people with elevated liver enzymes will help to minimize the potential liver damage.
And most importantly, Caregivers must take the time to give care to themselves. We wouldn�t have been able to make this journey without the help of the ALF representative, the support groups, the dedicated doctors, our loving families, and the support of friends and neighbors. When we were open about the HCV, and shared our story, we were overwhelmed by support from acquaintances and strangers. This support helped to make my job more manageable.
307 N Michigan Ave, Ste 800 | Chicago, Illinois 60601 | 312.360.0382 | Toll-Free: 800.299.6842 | Fax: 312.360.0388 | Email