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By Eileen McCluskey
It seemed the sun was warming
up everyone but me. The other parents stood on the corner outside the Lowell
School, waiting for our kindergartners to emerge at the end of the day. My
neighbors wore either light jackets or none at all.
Some of them laughed when they
saw me come down the hill, my winter jacket zipped to the neck, my hands in
gloves. But most of my pals didn't laugh.
They knew I'd started treatment
for Hepatitis C, and they'd noticed how my hair and my weight fell from me with
each successive shot of interferon. I stood in the sun with the others, my jeans
hanging loose around my once-curvy thighs, trying not to shiver.
Before embarking on treatment,
my right side constantly throbbed. My liver was swollen from battling the
interloper, the Hepatitis C virus that's so hard to kill. I was achy and
exhausted, and more than a little frightened.
The doctors' eyes had held
gentle concern while they watched my viral load skyrocket. We all knew time was
no longer on my side, as it had been when the diagnosis was first made, six
years earlier.
Back then, I didn't feel too
bad. That's the way it goes with Hepatitis C: you can have it for decades before
the symptoms become noticeable. The unfortunate ones are well on their way to
cirrhosis by then.
In the luckier ones, like me,
the liver hasn't yet been scarred when the virus is detected.
Hepatitis C likely found its
way into my body when I worked in a hospital blood lab back in the mid-1970s.
Those were the days before universal precautions. No one wore gloves, and I
handled test tubes full of blood every day, uncapping them, spinning them down
in the centrifuge, and siphoning off the serum for testing.
It wasn't
easy to surrender to treatment, even when the symptoms and viral load made it
clear I was in danger. Believe it or not, I had even bigger problems on my mind.
My husband Tim had died
suddenly, at precisely the time my liver succumbed to the hepatitis. I was in
shock at my husband's loss, and alone with my small daughter, Maeve, who was
just finishing preschool. It was hard enough to keep going day to day - how
could I possibly cope with the side effects of treatment?
I'd heard interferon often
caused clinical depression. Would it drag me so low I'd need an antidepressant?
This was a particularly frightening thought because my husband, who'd had
bi-polar disorder, had committed suicide - by taking all of his medications.
On the other hand, I knew I was
seriously ill and would need help soon. I owed it to Maeve to defeat this
treacherous virus, if indeed that was possible. My doctors played a critical
role for me during this terrible time. To my relief, they didn't pooh-pooh my
fears about entering treatment. Instead, they agreed I should
wait.
"You're a prime candidate for depression right now," my
hepatologist acknowledged, "and nothing terrible will happen if you wait a few
months while you grieve your husband's loss."
When he said that, my doctor
became my ally. I agreed to have monthly blood tests, and to see my physician
frequently.
I drew comfort during those
brief visits. We'd review my latest test results, all of which indicated my body
was losing the battle against the virus - and then he'd give me the assurance I
desperately needed: If I wanted to wait a bit longer, I could.
This doctor's approach was much
more than laissez faire. He had the courage to look, with me, at the traumatic
life experience I was going through, and work with me while I struggled to get
my feet back on the ground. His ability to deal with my emotional life gave me
the crucial support - and time - I needed to prepare for the inevitable.
Nine months had gone by. We were at the end of our pre-arranged waiting
period, and my heart was in my throat. I sat in the hepatologist's office, made
a joke about waiting one more month to see if my liver enzymes might magically
go down.
"I don't think we can rely on
that," the doctor said softly. "I think we need to have you start treatment
now." "Yes," I acknowledged.
So it was that I decided to take the drugs
I hoped would kill the virus. Treatment wouldn't guarantee that. But I had to
try - both for myself and my daughter. I was determined to stick with it for the
full twelve months, even though I'd read the side effects could be brutal. They
were, especially the nausea and fevers.
Gradually, the injections
became routine: Three times a week I pinched a thigh and felt the burn of the
interferon as it eased into a muscle. I viewed the itchy red patches on my legs,
where the needles went in, as badges of a body fighting for life. And throughout
the ordeal were people I could turn to for understanding and support, including
my physician.
Maeve entered kindergarten when I was halfway through
treatment. And on this sunny day that still held a chill for me, I stamped my
feet outside the Lowell School, trying to warm up.
Suddenly our children burst out
of the school doors, stopping us parents in the midst of our idle talk. Maeve
spotted me, opened her arms, and ran with all her might straight at me. Together
we headed up the hill. Maeve smiled up at me; I squeezed her hand. I'd taken off
my gloves for the occasion.
I finished treatment in April of 2000.
Subsequent blood tests show no sign of viral activity, and my liver enzymes are
normal. My energy is back, and so is my hair. Maeve is eight years old now, and
she remains a singular inspiration and my greatest joy.
But there is more to celebrate:
I recently remarried, and my wonderful new husband will adopt Maeve. We are
already a family, and we look forward to celebrating Maeve's adoption this
winter.
I thank my hepatologists for
the humanity they shared while I fought to regain my health. Special thanks also
to my primary physician, for crying with me when Tim took his life, then getting
down to the business of helping me move toward treatment.
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