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MEGA MARINE HOME
Living with
Hepatitis C and Alcoholism
in Central Florida.
By John A. Mayer
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.
Hepatitis C, a blood-borne infectious disease of the liver, is a leading cause of cirrhosis and liver cancer and the number one reason for liver transplants in the U.S. An estimated four to five million Americans are infected with the virus, with 35,000 to 180,000 new infections each year. It is responsible for 8,000 to 10,000 deaths per year and is more widespread than HIV/AIDS. Yet, comparatively, liver disease research and education gets a pittance in terms of government funding. ~ From the "Hepatitis Activist" web site.
"Why was I given this disease there is no cure for? I personally feel that we were given this disease because we are strong enough to handle it. Because we will and can do something about it. We can build our web pages, we can write to our government officials, we can educate the public, our loved ones, yes, even our Doctors about this disease. There are so many misconceptions." ~ Quoted from the "Hepatitis Central" web site.
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 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 and it's 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 grateful 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.
Please consider donating or helping out in any way you are able to the people who care in your area. It's up to all of us to show we can make a difference.
How House, Titusville, Fl.
For more information contact Mary Kraft; group facilitator at 321-453-1864.
Email: Marytsk@hotmail.com
The group meets on the second Tuesday of each month at 6:30 p.m. in the Wuesthoff Hospital Dining Rooms 1 and 2 in Cocoa, Florida.
Community Resources:
Brevard County Health Department
Rockledge
Path Clinic: 321-454-7100
Web Site: www.doh.state.fl.us/chdsitelist.htm
Wuesthoff Community Wellness Clinic
Cocoa
321-639-5177
Wuesthoff Hospital: www.wuesthoff.com
State of Florida Medicaid Program
Cocoa
321-690-3710
Web Site: www.stateofflorida.com/medicare1.html
Hepatitis Testing 100% CONFIDENTIAL, CONVENIENT AND ALWAYS LOCAL TO YOU!.
Related Organizations:
American Liver Foundation:
1-888-4-HEP-ABC (443-7222).
Web Site: www.liverfoundation.org
Hepatitis Central:
This web site claims to be the main web resource for all Hepatitis resources in the United States.
"Our information is organized, friendly, detailed, useful and free."
Web Site: www.hepatitis-central.com TOP OF PAGE
The Hepatitis Activist web site www.hepatitisactivist.org promotes an Instant Advocacy Initiative.
"Where you can help fight liver disease by e-mailing Congress."
You are encouraged to email a copy of this letter to your local Representative:
Re: Increasing Government Funding for Public Education
on HCV and Other Liver Diseases.
As my Representative, you ought to know former Surgeon General Everett Koop, MD has called Hepatitis C a "silent epidemic".
The death rate due to complications from this disease is expected to quadruple in the next 10 years.
Hepatitis C, a blood-borne infectious disease of the liver, is a leading cause of cirrhosis and liver cancer and the number-one reason for liver transplants in the U.S. An estimated four to five million Americans are infected with the virus, with 35,000 to 180,000 new infections each year.
In the United States, the Centers for Disease Control and Prevention estimate that Hepatitis C is responsible for 8,000 to 10,000 deaths per year and could increase to 38,000 by the year 2010, surpassing annual HIV/AIDS deaths.
There is no known cure and current treatment has an inadequate success rate (while often causing debilitating side effects). And yet, government funding for public education falls far behind that of other, less widespread diseases, such as HIV/AIDS.
I am requesting that you investigate this important area of public health and sponsor or co-sponsor legislation to allocate more funds to Hepatitis C education.
Thank you for your attention and consideration in regard to this serious matter.
Sincerely, (Your Name). TOP OF PAGE
The Benefits of Milk Thistle
Source: Heath Care Reality Check www.hcrc.org
Milk Thistle is a powerful Antioxidant. It is believed to protect your liver by interrupting the recirculation of toxins. The silymarin complex puts up a protective "shield" against liver-harming substances like alcohol and other would-be poisons. Some studies suggest that silymarin can protect intact liver cells or liver cells not yet irreversibly damaged by acting on the cell membranes to block the entry of toxic substances. It is also said to stimulate protein synthesis, thereby accelerating the regeneration process and production of new liver cells.
To the friends and families who offer support:
It's funny how a little hug
Makes everyone feel good.
In every place and language,
It's always understood.
Anger Management - by Michael S. Gisondi
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