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Editor’s note: Gerry
Moreno first wrote for Positively Aware about living
with hepatitis C virus (HCV)-HIV co-infection in September/October
2001 and again in March/April
2002. Last year he underwent a year-long treatment for
hepatitis C and kept a journal from which this article is
taken. The first part of this story details what he felt as
he underwent therapy, and the second part relates how he feels
now, along with his advice for other people living with these
two viruses.
That was then
Living with HCV/HIV co-infection
is like preparing a three-course meal. Not only do you have
to learn the ingredients of each dish (HIV and HCV), but also
the preparation (life-style changes) and of course the clean-up
(which would be treatment). I feel as if I have been preparing
this meal for the last 20 years, as the recipe keeps changing,
and more ingredients must be added. I was hoping that one
of the main courses would be completed, and the dishes put
away, but that doesn’t seem to be the case.
Bette Davis once said, “Fasten
your seat belts, it’s going to be a bumpy night,”
and that is exactly how I have been feeling on HCV treatment.
I started treatment in January of 2002, after many months
of preparation and meditation. I decided that everything else
in my life will take a back seat, and treatment would become
my priority for this year. I wanted to give treatment my best
shot. I feel that mental preparation, and being aware of the
difficulties that treatment can present, is the most important
factor to a successful course of treatment. My mantra for
this year is “One Day at a Time” and I am relying
heavily on my recovery program and my higher power for the
strength and courage to complete this course of treatment.
The therapy for chronic hepatitis
C has evolved steadily since alpha interferon was first approved
more than 10 years ago. At the present time, the optimal regimen
appears to be a 24- or 48-week course (depending on the HCV
genotype) of the combination of pegylated alpha interferon
and ribavirin. My genotype is 1A, so the course of treatment
is 48 weeks. That includes one injection per week (under the
skin) plus ribavirin (pill) at 400 mg two times per day.
I decided to give myself
my injection on Fridays, so that I would have two days to
recuperate before returning to work the following Monday.
Six hours following my first injection, I started to feel
all the classic side effects that are associated with interferon
therapy. These included flu-like symptoms such as fever, headaches,
nausea, muscle and body aches, loss of appetite, and fatigue.
I remember waking up in the middle of the night and thinking,
“Oh, my God, now I know what they are talking about,”
because it felt like the flu, but was more intense.
During the course of the
weekend I stayed in bed, curtains drawn because the sunlight
hurt my eyes, and slept. I started to feel better by Sunday
evening, but did not return to work until the following Tuesday.
During the week that followed I actually felt quite good,
and continued my life as I normally do (work, gym, and hobbies),
and I remember thinking that maybe this will not be that bad,
but I spoke too soon. I consider myself an optimist, but the
weeks that followed tested my limits.
After the second injection
I was bedridden with the usual side effects, the only difference
was my nausea had increased, my energy level decreased, and
I had shortness of breath. I recognized the latter two symptoms
as potentially being anemia, so I made an appointment to see
my physician. After a series of lab tests I was diagnosed
with anemia (no surprise), and also lactic acidosis (mitochondrial
damage), which was a big surprise. All medications were immediately
stopped, and that included both my HIV and HCV treatments,
and I started the treatment for anemia (Procrit). I remember
feeling like a failure, and got very depressed because I thought
that I would not be able to re-start HCV treatment again,
but three weeks later I re-started peg-interferon without
the anemia-causing ribavirin.
During the following month
(February) I was doing fine, sans HIV medication and ribavirin,
and my first HCV viral load confirmed that. My viral load
dropped from 550,000 IU to approximately 40,000 IU, and that
was without the addition of ribavirin. We re-introduced ribavirin
back into the treatment plan a month later at a lower dose
of 600 mg a day, and a month after that at 800 mg a day. I’m
tolerating it nicely today. In fact, I only need to give myself
Procrit when needed, and that hasn’t happened in a while.
During the month of March
I was beginning to get used to the routine, and side effects,
when I got an urgent call from my doctor. He asked me if I
wanted to hear the good news first, or the bad; and I chose
the good first. My HCV viral load came back at undetectable
(eight weeks), but my white count is very low, and I either
need to lower my interferon dose (not an option), or begin
Neupogen (which stimulates production of white blood cells).
I chose the Neupogen, and currently give myself two injections
per week. For a person who has 12 years of sobriety from injection
drug use, I am reminded everyday how far I have come, and
how grateful I am for the support my recovery program has
given me.
As I am writing this article
I am at week 27. Everyday is a new experience, and everyday
brings new surprises. I am responding very well (still have
undetectable HIV at six months) and have yet to re-start my
HIV medications. I hope to stay off them during the course
of HCV treatment.
My mental and emotional health
is like a roller coaster. I did not want to go on antidepressants,
and waited until the very last minute to do so. I am discovering
that whatever dysfunctional behaviors you may possess, they
are magnified on interferon therapy. I belong to a support
group, have a therapist, and am surrounding myself with love,
especially from my partner, who bares the brunt of my emotions.
This is now
My treatment goal was to
land on the moon; I didn’t quite get there, but I know
that I picked up a few stars along the way. This is how I
feel, today, about my treatment experience. If you had talked
to me a few months ago, my answer would have been quite different.
I responded to treatment
quite well; my HCV viral load went to undetectable levels
within three months and my liver function tests were perfectly
normal. With every passing month my hope for clearing the
HCV virus grew stronger, as I became more convicted toward
completion. At the end of treatment I continued to be HCV
undetectable, but I was also feeling a variety of emotions.
This was the hardest obstacle that I have ever endured in
my life. This experience taught me “one day at a time”
much better than many of my recovery experiences. I was elated
and exhausted at the same time, but now the next stage of
treatment was about to begin: the wait.
The following 60 days, after
treatment, went very well; I even continued to stay off all
my medication. I had stopped my HIV medication due to a contraindication
with my HCV treatment. Since I have been taking HIV meds since
the early days of AZT, to be completely drug free was a treat.
After 30 days I re-started
HIV meds without any difficulty. Everything was looking great,
and I was trying not to get my hopes up, but I could not help
it when all my liver markers were perfectly normal.
At 60 days post-treatment
everything continued to look good and my hopes continued to
strengthen, even though I tried not to think about it. Then
the phone call came. Everything that I had visualized, everything
that I had hoped for, ended with eight words, “You relapsed.
Your HCV viral load is back.”
When I heard those words
I got such a stomach ache that I could not speak. I was in
shock, and the disappointment that followed was nothing that
I had experienced before. I was at work, so I had to excuse
myself and take a walk around the block, and cry. I know that
I am at fault for having expectations, but I could not help
it. Everything looked so good! All I wanted to do was scream
out to my higher power, “What did I do wrong, why did
you let this happen?” So I did, down an alley; loud enough
for a lady to open her window and ask if I was all right.
Her words felt so comforting,
and I felt so safe, that I spent the next ten minutes sobbing.
I kept repeating “What did I do wrong” and you know
what, I could not think of anything. I am so grateful that
I gave treatment 150 percent, because if I hadn’t the
guilt would be over-powering, and I would be beating myself
up. When I returned to work I felt numb and I shared the information
with my co-workers, and I received so much support. I am fortunate
that I work in such a supportive environment; and this taught
me that having a strong support system is crucial before,
during and after treatment.
The weeks that followed were
filled with many emotions, but the emotion that dominated
was anger. I was so angry, not at myself, but at my higher
power. This is a new experience for me, but I am giving myself
permission to walk through this process in my own time.
I am coping with this by
staying very close to my support network, exercising and doing
yoga, having fun, and by working my 12-step program.
The knowledge that I received
histologic benefit (liver improvement) from treatment, even
without viral clearance, aided in the comfort. Seven months
post-treatment I requested a liver biopsy. I wanted to know
if I actually did receive some benefit, so I could plan not
only my future treatment strategies, but also my life. I am
very happy to report that the results in medical jargon are
“impressive” and in lay terms “f--k--g great.”
Minor inflammation, no fibrosis, and no activity are the post-treatment
results. This is a big improvement from pre-treatment; which
showed that I had some activity accompanied with fibrosis.
I should have been on treatment
longer. My doctor now says co-infected people may need to
be on hepatitis treatment for 18 months. There’s a better
interferon, that’s stronger and has less side effects,
coming out from another company, as well as new HIV drugs
on the market today. But my viral load is back up to where
it was, 1.5 million, which is low for hepatitis C (two million
or less). My liver enzymes and everything else are perfect.
My T-cells have been 350 since I can remember, and now they’re
550. I feel great now.
This is confirmation for
me, and I hope for all of you who are contemplating treatment,
that even if you are not successful in evicting the HCV virus,
containment and improvement are a big possibility. My vision
for the future will definitely include re-treatment; but now
I have the luxury to wait a year or two. I will serve another
eviction notice; it is now just a matter of when.
I definitely feel that patients
should not start both HIV and HCV treatment at the same time.
They also need to look at their emotional and mental health,
and if they are going through some stressful situations, they
may need to wait until they are in a better place. Above all,
they need to discuss this with their health team! I also believe
that HCV/HIV support groups are very positive, and can really
help while people are on treatment. I have started one at
our site, and it is working very well. We have speakers, as
well as success stories, sharing and answering questions.
I also supply massages and free videos to help them (pampering
is good, especially on treatment).
Living with co-infection
presents us daily with many challenges; but I encourage you
to take them one at a time. Take good care of yourself, and
remember that pampering is a positive thing. Go out and get
a massage, facial, or just take a hot bath; you will be surprised
at how good you will feel. “Reward” should not be
a foreign word to you, and it should happen daily, even if
it is just a positive affirmation. All these things should
be two, three, and four on your priority list; leaving the
number one slot to support. Develop a support network that
will include professionals, peers, and most importantly, loved
ones who will be there 24-7.
Life should be lived to the
fullest, and there is no reason that we should be left behind.
Gerald Moreno is the Health
Educator with the University of California San Diego Antiviral
Research Center. UCSD is a research facility that is currently
conducting clinical trials for people living with HIV and
HCV. For information on current and on-going trials, please
call Gerald Moreno at (619) 543-8080 x237.
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