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My friend has Hepatitis C and is an alcoholic. After attending three support group meetings, I left each time with a better sense of how important they really are. No one wants to deal with his or her mortality in the prime of life. To be robbed of the quality of that life due to illness can be devastating without friends and family.
Attending a Hepatitis support group meeting can be an eye opener. Dr. Gomez of Rockledge was the guest speaker and original founder. The room at Wuesthoff Hospital was filled to capacity and latecomers looked for more chairs. A more representative cross section of Brevard County, Florida residents would be hard to find.
Mary Kraft stood up and introduced the good Doctor. She had taken over and chaired these meetings every month since September, 1999. The dedication was obvious. A case of bottled water was placed on the table.
Dr. Gomez outlined new developments in treatment, side effects, and success rates. Two of his patients were free of symptoms and in remission for several years now. With continuing research and combination drugs, the future looked promising. He discussed the need for immunization against Type A and B Hepatitis. The last thing anyone in the room needed was more Hepatitis. Proper drug dosage based on liver enzyme tests was explained. Milk Thistle was lauded as being beneficial for the liver. We all listened intently.
The ensuing question period produced some surprises. At last month's meeting, James had informed us that after almost a year of Interferon treatments, his blood count was down to 200 and the disease was in remission. The optimism and hope he felt were dashed when it was learned a nurse had mistakenly left off three zeros. It was 200,000! Back to square one and constant fatigue.
The stories continued. Katherine told us of her two sons, who both had Hep C. One was in denial, and the other seeking treatment. Like any good mother, she urged her boys to get off the couch and JUST DO IT! She now realized that they just couldn't. Most people have no recognizable signs or symptoms except for constant fatigue. This was mistakenly thought to be laziness or lack of effort.
Jennifer had an alcohol problem, smoked, and had no insurance; all of which can be deadly. The free Path Clinic in Rockledge we were told, now provided blood tests necessary to determine treatment. Even after getting test results, the road to receiving costly Interferon cocktails and their crippling side effects can be a long one.
Dealing with the drugs can be as bad as the disease, and only a 21% to 61% remission rate can be hoped for. There is no permanent cure. Many patients will endure flu-like symptoms such as loss of appetite, nausea, vomiting, fever, weakness, tiredness, possible hair loss, and abdominal pain. Try to keep smiling through that! The majority said they would do it again to have a chance at feeling normal.
For many people in the room, the initial exposure to Hep C may have happened years or even decades before and was dormant until now. The most common cause was blood transfusions before modern screening was introduced. Other risks include infected drug and tattoo needles and shared straws used to "snort" drugs. In my opinion, most people present did not fall into the latter categories. Sexual transmission is rare if their is no blood to blood contact.
After the meeting, Katherine spoke with Jennifer's mother on the way to the parking lot. Their laughter echoed through the main entrance by the waterfall. The best medicine of all was being practiced. Nothing could relieve their common anguish any better.
Living with Hepatitis C or any other chronic illness can be devastating without friends and family. I came away from the meeting feeling greatful for the volunteers that give of themselves, providing knowledge and hope. Almost everyone today has access to the boundless and free resources of the Internet. The comfort and caring of a support group is priceless.
Updates and Resources: http://www.megamarine.com/hepatitis.htm