Hi, we are Dennie and Vivien, we live in Akron, Ohio. We both have Hepatitis C and this is our story.
I, Vivien, am writing this in the first person, but I write for both of us.
We have a somewhat unique perspective because we are not only heppers, but we each LIVE with a hepper, so we see both sides of the situation.
My husband and I met in 1972. Dennie was recently divorced and I was having problems with my marriage. He was the father of two boys, I was the mother of three boys.
We worked together in a bar and became good friends. This was a period of transition for both of us and we indulged in some heavy partying together. We drank and used drugs recreationally.
We also were involved in a “group tattooing” session with several of our partying friends.
During this period of time, my first husband was killed suddenly in an auto accident and his grief stricken parents abducted my children. With no money or resources, I was unable to find them and get them back for some time. These events increased my use of drugs and alcohol as a way of dealing with my losses.
After about a year of partying, we both became noticeably yellow and I was admitted to a hospital with severe abdominal pains. I was diagnosed as having Hepatitis B. Not being terribly bright at that time, I insisted on being released to go back to my partying. I had several bouts of severe pain after this and I went to the emergency room twice for treatment.
I was told that there was NO evidence of me having had Hepatitis B, and I was given a tranquilizer and an antacid and then sent home. Dennie had milder symptoms, but we both were quite sick for a while. We gradually began to feel better, chalked it up to partying too much and went on about our business.
After a couple years of living together, we were married in 1975. We had fought to find my sons and eventually managed to regain custody of them. Our daughter was born in 1976 and we obtained custody of Dennis’ boys. This gave us six children to care for and we settled down to raise our family. We continued to party on an occasional weekend basis only, and concentrated on making a good life for our children.
The children grew up fast and we watched them gradually move out and start families of their own. Dennie had gone back to his original occupation as a truck driver, both local and long distance. Life was fairly good for us. One day Dennie became nearly paralyzed at work. He was found to have cervical disc disease and arthritis. He was no longer able to pass the required physical for his employment. He was put on massive doses of progressively stronger pain killers. Our life began to crumble at this point, but our love for each other grew stronger.
I had suffered from fatigue for years, and had been referred to endless physicians and psychiatrists with no improvement. The medications they prescribed for me nearly caused me to have a nervous breakdown and I became more and more depressed over my inability to feel well. I finally gave up on receiving any help from that source. I learned to live with it and tried to offset the symptoms with diet pills. Self medication had become a way of life for me.
In March of 1996, I went to the local clinic for a mild case of bronchitis and routine blood work was done. I received the call a few days later, my liver enzymes were a little high and they wanted to do a follow up test, probably nothing to worry about. The second round of tests included a liver profile, and I received the news a few days later. The doctor told me over the phone that I was negative for antibodies to Hepatitis B, but did show antibodies for Hepatitis C, formerly known as Non- A, Non- B Hepatitis. He suggested that Dennie be tested too. He was found to be positive also. I was in shock and then in denial.
We both received letters from the Health Department with info on communicable diseases. I was told by the doctor that I should not kiss my grandchildren. This information of course was false, but it just goes to show how little the doctors knew at this point.
Life went on, I was in denial and refused to think about it. During this period, Dennie had a mild heart attack, but suffered no serious damage. On January 2, 1997, I had a major heart attack. I survived against all odds and I am fine now, with minimal damage, just a metal stent in my artery. But this event pushed me into reassessing my life and where it was going. We began to seek out information and advice. The addition of a computer to our lives was the motivating factor and we began to learn more about our illness, enabling us to make informed decisions and interact with others.
We started on a basic regimen of vitamins, milk thistle, gingko biloba, siberian ginseng and coenzyme Q10. We both had biopsies in the summer of 1998. My biopsy result was focal minimal early cirrhosis and non-specific severe chronic inflammation associated with acute focal inflammation, portal cells, clinically Hepatitis C.
Dennie’s biopsy showed adequate liver with fatty change associated with fibrosis with psuedolobules. No evidence of bile stasis. Extensive fibrosis noted. Fatty change with cirrhosis.
We embarked on a study at the University Hospital of Cleveland involving the use of Infergen on treatment naive patients. We were both considered to be unsuitable for combo treatment because of our heart conditions. Dennie started first and was put on 9mcg. 3 x weekly.
After three months, I was put on the same dose of Infergen and Dennie was upped to 15 mcg. At the end of another three months, we were both discontinued as non-responders. Our enzymes had stayed about the same, and my platelets and WBC were steadily dropping to alarming levels.
Our viral loads had more than TRIPLED during the course of the treatment. The Infergen treatment was well tolerated by both of us, but unfortunately, it didn’t work for us. We were genotyped but they were unable to determine a type for either of us. The theory is that the virus has probably mutated too badly to be classified.
About six months later, Dennie attempted the daily dosing Infergen in a study conducted at University Hospital. He ended up in the 9 mcg daily group, but when he showed no response, they again raised the dose to 15 mcg. His viral load shot up again and there was no improvement in his ALT and AST. He was discontinued again as a non-responder.
With our gastro’s approval, we continued to use the vitamins and herbs. Since going off treatment and doing nothing but the herbs and vitamins, we had liver enzymes in the high normal range for the first time in years.
Dennie has been on medications for pain for some time now. He originally was put on them to alleviate his arthritis pain, but now it’s needed for all his health problems. In addition to advanced cirrhosis, he suffers from cervical disc disease, arthritis, fibromyalgia, bursitis, and emphysema. He is treated by a pain management clinic and takes Percocets, Somas, and wears a morphine patch constantly.
I am beginning to notice more fatigue and increased problems with fluid retention. Our bloodwork results are gradually becoming worse.
Unless a miracle happens and a medication becomes available that will work for us, we both face the ultimate decision of transplant.
Dennie has made the decision NOT to have one for many reasons, the main one being that his overall health is so poor that he wouldn’t be considered a good candidate for transplant anyway. I, of course, would rather NOT have to have one, but am not ruling the possibility out at this time.
Now for the real issue, how do two people with hepatitis C get along? We have had to make major adjustments in our lifestyles but have done it so gradually that we didn’t notice it happening. We help each other, when one has a bad day, it seems like the other rallies. It is hard to get things done, but there are definite advantages to living with someone who truly knows what you are going through. There are times when we just pass each other and nod. There are times when we hold each other tight and cry together.
There are good times and bad times, but we are always together and our lives are intertwined in every way and using the lost book of remedies has helped us a ton.
There are times when we get on each other’s last nerve too. Sometimes it’s difficult to look at each other. It’s like seeing a reflection in a bad mirror…the pain, confusion, sadness and regret are there in the other’s eyes.
There is also the feeling of complete understanding and acceptance though. There are no feelings of anger or resentment towards each other…we got this together, we are in this together and we will stick it out.
At this time, we are resting, waiting to see what will come along, and trying to take care of ourselves to the best of our ability. We are sharing our story in the hope that someone will be able to learn something from us, just as we have learned from others.
We have not given up the fight, we are just searching for new weapons and with the Dr. Apelian’s lost book of herbal remedies in our disposal, we’ll win the war.
Please feel free to contact us if you need to talk to someone who understands. Contact Vivien (Lyric) by email at contact us page.