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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.
The Meeting Her Updated Condition
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.
Follow up: After contacting the Path Clinic, it was learned that they do NOT provide free Hep C liver enzyme blood test results, even though they will draw the blood. It was just another setback among many. The next step is to see a gastroenterologist to obtain a prescription for the latest Interferon combo drug, and then contact Schering Oncology-Biotech for a no cost supply. That's when the real test begins. My friend is beginning to feel better after starting the same herbal combo program that helped singer Naomi Judd.
Update: (Nov. 2002) After a gastroenterologist analyzed the PCR and Viral Load blood tests in Sept., it looks as though Interferon will be necessary. A neighbor in Cape Canaveral is undergoing treatment right now so we have a pretty good idea of what to expect. Hair loss, nausea, etc.. On the positive side she is in remission and continuing to improve.
Update: (Mar. 2003) Our neighbor has finished the program and only time will tell if she will stay in remission. So far...so good! We are all cheering for her and offer our congratulations.
Update: (May. 2003) My friend has stayed away from alcohol for quite some time now and believe me it wasn't easy. No doctor would give her a prescription as long as she drank because of the reduced effectiveness of the drugs. In about six months, she will try again to get treatment. In the meantime, she is doing much better and shows no obvious signs of the disease. I think milk thistle really does work.
Update: (Aug. 2003) Alcoholism is not an easy disease to cope with, both for the person affected and the ones who care. She has good days and bad days, but the bottom line is still one of denial and depression. In September we will get more blood tests but treatment is not possible at this time.
Update: (Jan. 2004) After becoming embarrassingly drunk on Christmas Day, Alcoholics Anonymous is now the only alternative. Sober since Dec. 26th with the help of the program, she now realizes there can be no other way. When her self esteem has been restored, it will be time to begin the long journey to wellness and a happier life.
Our neighbor Is still in remission for Hep C and is helping my friend at A.A. meetings. This is her sixth year of sobriety and she is doing great. I have always believed that if you have enough will and determination, you can overcome anything. It doesn't help that I still drink, but my selfish justification is that I'm so set in my ways I can't or won't change.
Lifestyle changes are never easy but when the wear and tear of age catches up with you, there is no other choice but to stop killing yourself and correct the misdeeds of the past. I may have to deal with my own over-indulgence much sooner than later. When Neil Young wrote "24 and so much more" he forgot to mention the "so much less" that comes after the more. "Indestructible" is no longer in my vocabulary unless it refers to great trees that are envied by the wind. We will all die soon enough, but not today. In my mind the ocean roars and the surf crashes over my friend, quelling temptation and taking her fear back out to sea. But that would be too easy.
Update: (Feb. 2004) Dealing with Hepatitis C is taking a back seat to dealing with drinking. She goes to the AA meetings but considers it punishment. On the positive side, she goes to work, enjoys her job and comes home sober. The long term commitment necessary for her return to wellness will not come easily.
Update: (Apr. 2004) AA has not made a difference and she hasn't gone to a meeting in over a month. In that time she fallen off a number of times and of course, regrets it the next day. Any ordinary problem can be an excuse to relapse and when this happens she will hide alcohol and drink it until the last drop is gone. She becomes embarrassingly drunk and can't walk or even stand. So far, her job and punctuality have not been affected and she returns to being the wonderful, caring person I know. Treatment for Hep C is taking a back seat to this all consuming problem. Professional counseling may be the only answer but who can afford it?
Update: (Aug. 2004) A newfound determination to remain in control and limit alcohol to 2 beers per day with the help of MJ has worked for over a month. We'll see if it continues. She seems happier and more at ease. On the down side we just learned that a good friend has developed cirrhosis after struggling with Hep C for 20 years. The herbal combo he was taking could not prevent this and PegIntron may be the only answer.
Update: (Nov. 2004) We are back in Florida and my heart and spirit are as broken as they ever have been in my entire life. It seems that there is no end to the lies, excuses and craving for alcohol. Her sister's birthday luncheon was cancelled because she was too drunk to go without making a fool of herself. I may have to let her fly, crash and burn - or find herself. I love this woman dearly and do what I can to help her, but she is killing me. My contempt, scorn and ridicule seem impossible to control. Maybe my strength of character is not up to the task. On the positive side, she has a job at the Radisson and is doing just fine for now. My fear is that one day she will end up in the emergency room with a distended stomach and internal hemorrhaging like her sister. She came close to death and has been in AA ever since.
"You are as the snow flakes, beautiful but it's beauty is equal to it's fragility. A snow flake in your hand reverts to it's essence, water."
Update: (Feb. 2005) - Poetry
First trip to "Circles of Care" in Melbourne
ROCK BOTTOM
The Doctor said you
were sitting on a fence
Somewhere between here and rock bottom,
But you wouldn't go to the halfway house
Where help was offered and had to be earned.
I was a fool to bring you home and give you
Yet another chance to stop drinking for good.
All you had to do was stay sober, find a job
And go to ninety meetings in ninety days.
It took three days for the spin cycle to kick in
And a full load of clean sheets was thrown
From a whirling barrel onto the dirty floor.
I don't think I can fix the machine this time.
Four months ago we said goodbye to my family
And got ready to head south for the winter.
I hope this parting memory will haunt and
Inspire you for the rest of your life.
My three-year-old granddaughter
Stood at the top of the stairs
With tears streaming down her face and asked,
"Where are you going, Auntie 'M'?"
You gave her such a big hug full of love
And told her that you weren't going forever.
But the quicksand already held your leg,
Just waiting for you to struggle and sink.
Waiting to pull you down to rock bottom.
Update: (Mar. / Apr. 2005) - More Poetry
Second trip to "Circles of Care" in Melbourne
She is now in a half-way house in Titusville after completing the 28 day program in Melbourne. Time will only tell if she is successful at the end of treatment.
"In watermelon sugar the deeds were done and done again as my life is done in watermelon sugar." Richard Brautigan
Update: (Oct. / Nov. 2005)
She is still in the half-way house, sober, saving money and working every day. She even bought a car! Everyone is very proud and supportive of her efforts. When she is ready to leave her safe haven and become truly independent again, I'm sure she will tell us. Until then, we can share beach days, dinners and laughter.
Update: (Mar. 2006)
SUCCESS!!!
It took a whole year but she has left the half-way house and is now a new person full of confidence and goals. Her circle of friends has widened and she is much loved by everyone. We see her as she truly is without the influence of alcohol and depression. My eyes are a little misty as I write this. Many thanks to How House and the staff for bringing her back to me and her family. Without programs like this many more good people would fall through the cracks never to be seen again. 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. The next step is to deal with Hepatitis but she shows no obvious signs, so treatment can wait until the time is right.
How House,
Titusville, Fl.
Update: (Jan. 2007)
Our Christmas was full of love, happiness, joy and a new tree ornament every day - she loves to shop! My stress level is way down but my belt size is up. I gotta work on that. Life is good!
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
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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