June of 1996, after a long and celebrated pregnancy, my
husband and I planned for the arrival of our first son,
little Richie. The nursery was made up, the bags were packed
and we were ready to bring this little boy into a world
filled with love. We went to the obstetricians office on
Thursday and everything looked good. I was 41 1/2 weeks
gestation (overdue by almost 2 weeks) so the doctor decided
that if the baby didn't come over the weekend, we would
induce on Monday.
evening it looked at if the blessed event had come. The
contractions came erratically but we headed off to the hospital
in great delight. We arrived at the hospital and were treated
to all the wonderful smiles and encouragement that all new
parents receive. We were set up in a birthing room and told
to prepare for the blessed event. Within a few minutes after
settling in, the nurse came in and hooked me up to a fetal
monitor, iv's and what not. We knew then, that something
was drastically wrong. There was no fetal heartbeat. The
nurse said not to worry and ran out and got the doctor.
After several minutes of turning and moving to try and get
the heartbeat, the doctor finally said, Theresa, I think
your baby is dead. You can't imagine the shock and pain
and heartbreak that my husband and I felt at that moment.
We had waited 9 months, we had done everything right, the
contractions had finally come and we were there to have
our baby - the doctor offered little hope. To confirm our
situation, the doctor ordered a specialist from ultrasound
to come in and check for life. It was a long wait - in the
middle of the night - it took the ultrasound technician
about 2 hours to get there - I laid there - having contractions
- waiting for a glimmer of hope. The ultrasound technician
offered no hope and confirmed that our little Richie had
died just hours before in my womb.
immediately shot full of morphine and given pain killers
and an epidural. The worst part was yet to come. I had to
give birth to a dead baby. Needless to say the resulting
events, the birth, the visitation, the funeral and the burial
were the most unbelievably sad moments of my life. I was
not myself - just a shell without a soul. This event totally
destroyed me as a woman. inside myself I had no confidence,
I couldn't do anything. I couldn't drive, couldn't speak,
couldn't work, couldn't go to the grocery store. I was a
total failure as a woman - and this over took my soul completely.
I had no control and ended up in therapy for over a year.
a year or so of intense therapy, much pain, a new house
and much love from my family - My husband and I decided
to try again. The pain and fear was of course, overwhelming.
But we tried it anyway. This time, we were going to do it
right. We went to the best specialist in the world. Dr.
Mowad at the University of Chicago Hospital. I had tests,
after tests, after tests, I saw him every week for 8 months.
I had 4 ultrasounds, not a pimple would appear without his
knowing it. He took fabulous care of me. We decided at 38
weeks that we were not going to let this happen again. We
would take the baby early. We decided to induce and bring
the baby along 2 weeks early.
again, the blessed event had come. We were treated like
royalty as they hooked me up to iv's and fetal monitors
and epidurals. The heartbeat was strong. We were going to
have a baby.!!!! Some time during the night, once again,
things changed - a resident came into the room and said,
"Theresa, I see you have Hepatitis C". I said, "what?",
he said yes, your test results show you have HCV. I assured
him that their had been a mistake and that I had never heard
of such a thing. He went to the computer and printed out
the results and showed me that 6 months earlier, I had been
tested and results showed that I had the antibody of hepatitis
C. The resident didn't know what to say, I asked about the
baby, he didn't know, I asked what the disease would do
to me, he didn't know, he offered a glimmer of hope and
said that perhaps a false positive had resulted from my
pregnancy. So they tested me again. The results of the HCV
antibody test were positive once more. They could offer
me no information, nothing - they said I would have to go
to a liver guy for answers. In the meantime, I had to give
birth to this baby. I had Connor Riley Callahan, 24 hours
later and he was a beautiful baby boy. Very healthy, pink
and perfect. For the moment we were in heaven.
six week checkup, I asked Dr. Mo how this could be. He told
me that when he ordered tests for Hep B, they tested me
for Hep C as well. He had just never looked for those results
- so he was as surprised as I was. He confirmed the results
of the antibody test once again, could offer me no help
in terms of prognosis - he knew it could be bad, but suggested
I go to a liver doc. That was the last time I thought about
it for a while.
the next 6 months or so, I started to gather information.
I read studies, I joined chat rooms, I made friends with
Heppers on the net. I got stories and treatment and information.
I really did my homework. I could quote studies and results
paragraph by paragraph, and I had a plan. I found one of
the leading hepatologists in the country at Rush-Presbyterian
hospital here in the city. I knew that they were a leading
transplant center and I knew they had doctors, hepatologists
that worked strictly with hepatitis C. I went there for
info and treatment. This doctor was quite impressed with
my approach, I went in knowing what the statistics were.
I knew several heppers that had been treated for years unsuccessfully
and I had the data to prove it. I went in asking for what
I wanted and he respected that. We started with the standard
tests and biopsy. December of 98 my liver enzymes were a
little high, in the 60's and my viral load was 8 million.
I was diagnosed with genotype 1 b. My liver biopsy showed
Grade 2 Stage 2 progression. Some fibrosis but no bridging.
It was time to talk treatment.
doc knew I knew my stuff. I had seen too many people try
the standard treatments - interferon 3 x per week and fail.
I knew that was not an option for me. The combination therapy
of interferon + ribavirin 3 times per week was the standard
treatment then, but I wouldn't have it. The results of the
combination therapy were not much more promising. I had
read studies about the Amgen interferon called INFERGEN.
I knew that this was a synthetic interferon and when compared
to the other interferon - head to head - the synthetic,
INFERGEN did much better in studies. Especially with 1b'ers
like me. I also knew from working and talking on the internet
that 3 x per week was a dinosaur story. I wasn't going to
go that way - no way - It was going to be daily or the highway.
My doctor agreed that INFERGEN was the superior interferon
- he also agreed that daily treatment was the best approach
in my case. We only had one hurdle. I had to use ribavirin
in combination with any interferon I used. We all know that
the ribavirin was bundled with the standard interferon from
Schrinng. My doctor could not legally prescribe ribavirin
for me to use with the INFERGEN so I told him that he had
to do what he had to do - and that I would do what I had
to do. I contacted the PWA - People with Aids in New York
city - and purchased the ribavirin on my own. He would prescribe
the Infergen daily and would take the ribavirn every day.
We were off to the races. I waited a few months to get leave
from my job - I had more tests done in March of 99 - by
then my viral load had shot up to 17 Million. It was time
for me to treat.
how the treatment went in a nutshell.
1 - 2 - Infergen 15 mcg's every day ( I really did 18mcg
because I would do every last drop.) plus 800 mgs ribavirin.
I took milk thistle, vitamin E and Vitamin C every day.
I was already taking Ativan (lorazapam) for anxiety. Blood
tests, liver enzymes, cbc, white count every week. I was
ok the first week or so, just the standard hot flashes with
fever. My energy was up because the ribavirin is like taking
straight speed. Blood counts were good.
3 - 4 - Infergen 15 mcg's every day plus 800 mgs ribavirn.
Blood tests, liver enzymes, cbc and white count every week.
Fatigue started to settle in, I couldn't sleep and started
taking antidepressants. I took welbutryn 400 mgs per day
and paxil 20 mgs per day. I started ambian 10 mg per day
for sleep. Continued with lorazapam, vitamin E, milk thistle
and vitamin C. They did a 4 week PCR and I came back undetectable.
HALY - FREAKING - LUYA !!!!! I went from a viral load of
17 million to less than detectable in 30 days. My blood
tests showed normal enzymes - blood counts were really low
- but we agreed that I could handle it.
4 - 12 - Infergen 9 mcg's per day (I really did 12mcg because
I would do every last drop.) plus 800 mgs ribavirin. Standard
vitamins and milk thistle and antidepressants. The Fatigue
and the hair loss started. I couldn't really work because
brain fog had me very confused. I couldn't think, couldn't
remember anything, I had to write down everything. I slept
all the time - I didn't really eat very much - I felt puky
all the time. I started taking compazine for the nausea.
I had bouts - severe bouts with muscle aches. My legs would
hurt so much I would cry. Headaches would blow the back
of my head off. I started taking Vicoprofin for the pain.
(IMPORTANT NOTE HERE: I did not take any of these complaints
to my liver doctor - I found out early that he only treated
the liver and not the symptoms of the treatment - I had
to find an internist that knew about hep c to treat all
the other symptoms. Fortunately, my liver doc sent me to
a good internist who gave me what I needed to survive.)
I also feared greatly that if I complained of all of this
to my liver doc that he might get nervous with such an agressive
treatment. I felt it best to keep him thinking I was going
along fine - I never wanted to risk him backing out and
pulling me off of treatment. Week 12 all liver enzymes were
normal PCR was undetectable AGAIN.!!! Blood counts were
low - thyroid was normal.
12 - 26 - Infergen 9 mcg's per day plus ribavirin 800 mgs.
Milk thistle, vitamin E, vitamin C, lorazapam, vicoprofin,
ambian and compazine. (I tell ya, I had an Easter basket
with all of my pills in it.) I did not work, couldn't work,
would get breathless, could not run up the flight of stairs,
very tired, puky and depressed. Went for blood work every
2 weeks or so - everything stayed the same - enzymes were
normal, blood counts were low and week 26 PCR was UNDETECTABLE
AGAIN. Energy although low was better - I was able to function
within my household. I took care of my 2 children, Connor
Riley was about a year old now and Kelly, my daughter was
10. Could do small jobs in the house - could do some shopping
and errands and stuff. Most people looking at me would only
notice the hair. I had to cut my hair real short because
it got real thin. I got real thin too. Lost about 20 lbs
by this time.
26 - 52 - I did a full year of treatment. Every day I did
9 mcg's of INFERGEN plus 800 mgs of ribavirin. I took all
of my pills right on schedule. Milk thistle, compazine,
lorazapam, ambian, welbutryn, paxil, vitamin e and vitamin
C. Blood work was done about once a month during these last
6 months. My blood counts remained low - my body adjusted
and I was able to function pretty well around the house.
The brain fog never really did get better during treatment.
I was weaker emotionally and could not concentrate as I
once had. The 9 month PCR and the 12 Month PCR both came
back UNDETECTABLE. I lost 30 lbs and ended up wearing a
wig in the end. 365 Shots - I was ready for this to end.
about a month for me to regain most of my brain power back
- I say most because it truly took about 3 months for my
head to clear. A month after I stopped treatment I went
back to work. It was amazing how quickly I regained my strength
and agility. The headaches continued for about 6 months
- but overall I bounced back from treatment very well -
with no long term size effects.
treatment 6 months PCR - UNDETECTABLE Blood counts normal,
liver enzymes normal. TSH normal.
treatment 12 month (1 Year) PCR - UNDETECTABLE. Blood counts
normal, liver enzymes normal. TSH normal.
term effects - except maybe the dragon is dead now. I would
do this again in a heartbeat. I don't want any of you to
think I suffered though this - was a challenge that I took
on willingly. With the love and support of my family and
friends I made it through what I thought I had to do to
save my life. I would do it again tomorrow. I thank my Doctor
for being courageous enough to do the right thing and I
thank everyone on line for being with me every step of the
way. I've given a pretty detailed account of my symptoms
- but I want all to know that the medication I took elevated
most of them so that I could function daily. If I had to
have worked during the last 6 months of this - I probably
could - I was fortunate enough not to have had to. This
was definitely the right thing to do.
last note that I would like to add is this. When my son
Connor was 3 months old, we had him tested for the HCV antibody.
Unfortunately it came back positive. My year or so of research
had told me that this was normal, and in fact, the antibodies
that he was carrying in his blood were mine. We had him
tested again at 1 year, and again it was positive for antibodies.
I had to fight with my pediatrician to get him to back off
- he was convinced that the antibodies were his own and
in fact he should see a specialist. We actually had arguments
where he told me I was wrong. Finally - after waiting 2
years - we had Connor tested for the antibody again. We
had decided that if the antibody was still there after 2
years that we would indeed then, have a PCR done and look
at our treatment options. Fortunately by age 2 - the antibody
test came back negative - I was right once again - and all
along those were my antibodies that were hanging around
in his blood stream. ( I made that pediatrician eat his
words.) He is antibody negative today and as healthy as
a horse. My daughter - who is now 12 and my husband who
is 37 is negative as well.
and Love to you all.
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