April 7, 2007

Donna Z

This is my story of my life with HCV. It's a hard one
to tell and I don't think I've told anyone the whole
story because of the pain and disappointment I felt in
myself.

First I should tell you that I was an IV drug user for
five years. It isn't necessary to tell you how I got
there, but when I was ready to quit, I quit and for
many years I was drug free. This is how I got Hep C.

My doctor knew I had used drugs in the past, In fact,
when I first started seeing him, I had told him and he
told me that if I ever started using again, he would
drop me as a patient.

About year six after I had stopped using, I wasn't
feeling well, always tired, unable to sleep, depressed
all the time, My doctor said my symptoms were all
symptoms of depression and gave me Prozac to help me
out of my depression, and for the next seven years I
was on Prozac. He said I had clinical depression,
brought on by my past drug use and would probably need
to be on Prozac for the rest of my life.

I was still tired all the time, still unable to sleep,
but my mood was better so I pushed on. I am a
survivor.

I continued to go to my doctor, still complaining
about my symptoms. He continued to run blood test,
told me to eat better and exercise more. The standard
for healthy living. But I did nothing and continued
to fall deeper and deeper into depression.

Unknown to me, the blood test my doctor continued to
run on me (on my monthly trip to his office, begging
for help) included Liver enzyme test and test for
hepatitis.

During one visit to see my doctor, he told me I had
hepatitis B at some point in the past but my body had
cleared the virus and I had non-A / non-B hepatitis.
My memory is a bit fuzzy, but it was around that time
that they had named the virus Hepatitis C. My doctor
continue to run blood test and finally on one visit he
told me I had hepatitis C. During that visit, he
confirmed the symptoms I had were directly related to
hep C. So not knowing anything about hep c, I asked
what I could do about it. His exact words were, "the
cure was worse then the disease" and by the time it
would effect my life it would be another 20 years. It
had already been ten years since I had started
complaining. Don't misunderstand me, I was depressed,
and I do believe it was brought on by my use of drugs,
but I always knew there was something more going on
with my body then just depression. My fear at that
time was HIV. Thank goodness I don't have that.

I asked him to prescribe something for me to sleep.
Anything to help me cope. He refused saying due to my
past history of drug abuse it wouldn't be wise. It
was after continued request for symptom relief, and
continued refusal, I stopped seeing my doctor, and
turned back to the streets to find something to
relieve my symptoms. I started smoking pot again.
One joint every night to help me get to sleep. Once I
took that step, I stopped going to my doctor
completely. He had made it clear at my first visit
with him that if I started using he would drop me, so
I dropped him first. (Very bad attitude and in hind
sight, I should have found a different doctor after my
first visit with him.)

So I continued in this manner smoking pot at night and
working at my office job during the day for three or
four years. One day I got a letter from my doctors
office, saying he was retiring and my records were
being sent to sstorage

So I went and picked up my records so if I ever
ddecidedto go to a new doctor, I'd have them.

My insurance company required me to pick out a new
PCP, so I picked one that was close to where I was
living, unconcerned about what kind of doctor he was
as I had no intention on going back to see a doctor.
I had an illness that was of no concern to me.

Well about 20 years into my illness I needed to go to
the new doctor. I brought my records with me. I told
the new doctor, upfront that I was smoking pot and if
he did not want to treat me for my cold "I understood
and wouldn't waste his time.

He agreed to treat me, then asked me what I was doing
about my hep C. I told him nothing, and told him
what the old doctor had said about the cure. The new
doctor suggested I look into doing something and gave
me the information I needed to make a decision about
the hep c. I agreed to a viral load test.

I went back for the results about two weeks later and
the test showed the viral load around 700,000 at that
time. I told him I wanted to do something about it
and he sent me to a specialist.

I told my specialist about my past and present use of
drugs. The specialist wanted to do a biopsy. He told
me it would be painless and would only require me to
be out of work for one to three days. I aagreed He
explained all the risk to me and said he never had a
problem doing a biopsy. But as luck would have it, I
was the one patient who had a problem. Three days
turned into three weeks, and a sick day turned into
sick leave.

When I received the results from the biopsy, it was
determined I was a Geno type 1 but that was all he was
able to determine. He said the area where he did the
biopsy was fibrosis and he was unable to determine
anything else.

Wediscussedd the treatment options and I aagreed to
the Rebetol combination treatment. With all the
things I had heard and read about the treatment, I had
decided to take six months off work. Well this
decision caused a rif between my spouse and myself
because I had been the "breadwinner" in the family. I
was earning a six figure salary and we had a six
figure life style.

So I postponed the treatment until (I thought) "we"
were ready financially. I forced my spouse to file
bankruptcy, so the only bill we had was a house
payment and and car payment. And believe me I even
tried to get my spouse to sell the house and move into
a smaller space so he wouldn't feel stressed by the
large mortgage payment. But my spouse wouldn't do it.

I tell you about the issues between my spouse and I
because it is important to know, that if you and your
spouse have any issues present before treatment, you
need to make sure your marriage is strong before you
go on the treatment or be prepared to face the truth
about your relationship.

So here I was with a spouse of thirty years, who
resented the fact that I needed time to take care of
me for a change. I put my spouse in charge of making
the money, the checkbook, and paying the bills and I
concentrated on me.

During the first six months of treatment, I had quit
smoking pot and my spouse and I grew further apart. I
could not count on my spouse for anything.I tried my
best to keep things "normal" the fact that I had
taken time off work took it's toll on me and my
marriage.

The treatment it self was not as bad as I had thought
it would be. I had joined a gym and was working out
every day, eating right, and was probably in the best
shape in my life. I had my days when the depression
crept into my mood but as long as I kept busy, I was
able to keep it at bay. It seemed the biggest problem
I had was my spouse.

My treatment ended and the end result was my viral
load had dropped to 26000 after six months but I was
considered a non responder. As was required by the
"FDA" I could not continue to use the medication if I
did not respond during the first six months.

The doc told me to take three months and let the
medications clear out of my system and by then there
would be new medications on the market.

During the three month period my spouse kept insisting
I go back to work. So I did and wound up working for
three months. After working the three months and
being off the medications for three months, the FDA
approved Pegylated Interferon.

Back to the doctor I went and I started on the
pegPegylated Interferon , ribrivan combination
treatment It was about that time that I was laid off
from work and I applied for my unemployment.

Of course my spouse couldn't shut up about me working,
and when I finally said we need to talk about this, I
was on the new treatment for about two weeks. I was a
mess. I had stopped going to the gym, I had stopped
my good diet and went back to my old habit's of eating
junk food, when I went back to work. Everything good I
had done during the first round of treatment and
stopped because I let work get in the way. (hind
sight tells me I should have not gone back to work)

Well, my husband and I had sat down to "talk" about
our marriage issues and fifteen minutes later, he had
talked me into moving out of the house and ending our
marriage of 30 years. This was a major hit for me and
sent me into deep depression. Three days later I was
in my own apartment. Well, at this point, I felt I
had no choice but to go back to work so I found
another job, it took me about a month and for the next
six months I was on the Pegylated Interferon/Ribrivan
treatment and working. I fell into what I call "black
hole" depression. (Suicide mode) How much was related
to medication and how much was related to the breakup
of my marriage I'll never know but after five months
on the treatment my doctor said enough was enough and
took me off the medication. It was at this time and
after being drug free from hard drugs for fifteen
years, I went back to the streets and found something
new on the illegal drug market. Something to bring me
up out of the black hole depression, at least for a
little while. In reality, it only sent me deeper into
depression when I came off of them.

So for the next six months, I used illegal drugs and
continued to work at my job and continued to go deeper
and deeper into the black hole. By this time, there
were some clinical trials going on and I decided I
wanted to try one last time before I gave up on life
completely. So I quit using drugs, (which in and of
itself was a trying time) went back to the doctor and
got enrolled in a B-12 trial.

The B-12 trial was a combination Pegylated Interferon,
Ribivian, and 1000mgs of B-12 administered via
injections at the start of treatment and at six
months. Treatment period was for 48 weeks.

Well, I am happy to say, that after three months of
treatment, my viral load was undetectable and at six
months after treatment it is still undetechable. I go
back to the doctor after 12 months off the treatment
to see if I am still undetachable. I pray that it
will be.

There are some lessons I learned over this five year
period of roller coaster rides on the treatment that I
want to share with you.

1. Before you start any treatment, make sure you have
a strong support network of friends and family.
2. Make sure you are prepared financially, just in
case your treatment causes you to stop working.
3. Find a doctor you are comfortable with and one you
can be totally honest with.
4. Find a good councilor before you start treatment
and no matter what, go every month or every week if
necessary.
5. Find a Hep C support group where you can talk
about what you're going through. (contact the American
Liver Foundation to find one in your area)
6. Eat healthy and exercise on a regular basis. This
will keep the depression at bay. Start this before
you start treatment.
7. And finally stay off the illegal drugs!!!! If you
are a former drug user, join NA before you start
treatment.