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
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
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
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. 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.
Please feel free to contact us if you need to talk to
someone who understands. Contact Vivien (Lyric) by email
and Dennis (Wyck) by email at firstname.lastname@example.org