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Three Months In My Father’s Battle With Hepatitis C

April 12
by
Jules Oden
in
Health
with
.

LaGrange, Illinois. July 1965.


It’s a bright, beautifully sunny day in the suburban American Midwest. The setting mirrors that of the peaceful Main Street post-war image we so often associate with complacency and prosperity; a young mother sits on her front law and reads the newspaper as she watches her two young boys frolic carelessly around the neighborhood on their shiny, new bikes.

She finishes the front page, smiles and stands as she gets up to bring the boys something to drink. Once inside, she reaches for the handle of the refrigerator, only to be immediately paralyzed by the all-too-familiar sound of a piercing adolescent shriek. She rushes out of the house, blind with hysteria.

Something’s wrong, she thinks. Something is terribly wrong.

She races around the block in a frenzy, and spots her youngest son, Brett, running toward her, screaming, tears running down his face. “It’s Dave! Mom, help – please help. Dave needs help.”

She picks up Brett and runs down the street, desperately searching for her oldest son, David. As she approaches the end of the street, her horrifying suspicions materialize.

The mangled iron bars of a previously pristine bicycle lay smashed at the base of a large oak tree. Her eyes follow a chilling trail of blood, at the end of which she finds her 10-year-old son, unconscious, with the handlebar of the bike pierced cleanly and completely through his abdomen.

Passersby accumulate, terrified by the vast pool of blood that seemed all too large for such a small boy. After a frantic ambulance trip and immediate rush into surgery, Dave’s mother, Jeanne, and father, Gil, sit nervously in the hospital lobby awaiting an update on their son.

An exhausted doctor emerges from the back doors. “Well, all I can say is, Dave is one of the luckiest kids I know. He has suffered extensive internal injuries, lacerated his liver, and experienced a near lethal level of blood loss on top of everything else.  However, he has received a series of life-saving blood transfusions and is responding well to surgery. This is nothing short of a miracle. Your son is very lucky. He’s going to be okay.”

Life-saving. Lucky. Miracle.

Jeanne replays these words over in her mind. She breathes a sigh of relief.

Dave’s going to be okay. He’s going to live. My son is going to be okay. Or so she had thought.

Fast-forward roughly thirty years, to a warm summer in the lackadaisical suburbs of 1990s Atlanta. A 38-year-old Dave makes his daily morning drive to work at the Delta Air Lines headquarters. He sits behind the wheel, smiling, thinking about his beautiful wife, Jan, and two precious children, Julia and Dylan.

He had just received a promotion at work. Jan had mentioned just last night about trying for another child, something he had secretly been wishing for himself. Life was good. No, he thinks, life was perfect.

Turning into the company parking lot, Dave notices a sign for a company-wide blood drive. In an unusually cheerful mood, he thinks, why not? Might as well spread around some good fortune. He heads over to the donation center, signs up, sits down, and lets the friendly nurse draw his blood.

A half hour passes. As Dave sits patiently eating his obligatory crackers, he notices a few nurses congregating toward the back of the room, whispering and stealing occasional glances at him. One of them approaches, with an unsettling look on her face.

“Hello, David, is it? I’m so sorry, but we’re not going to be able to accept your blood.”

“I’m sorry?”

“Your blood. We can’t take it. Our screening shows that it’s tested positive for Hepatitis C. We recommend you see a doctor as soon as possible.”

A heated wave of panic and confusion washes over him. What the hell? Only tattooed drug-using hippies have Hep C. I don’t do any of that. This is impossible.

Their tests must be wrong.

In a confused daze, Dave gets up, takes their useless information packet, and drives to the nearest hospital. They’re wrong, he thought. They have to be. I’ll go make sure of it right now.

After an exhaustive day of tests and imaging, Dave sits in his examination room restlessly thinking over the past 24 hours. What if this is real? What if I’m actually positive? What am I going tell Jan? Wait, what about the kids?

A stoic-looking doctor enters the room, holding a huge packet of information. “Dave, I’m afraid I have some bad news.”

His heart sinks.

“You need further testing, and we’re going to set you up with a specialist, but yes, you are positive for Hepatitis C. Dave, normally I’d tell you not to worry, but I’m afraid the Hep C has presented you with Stage IV liver disease. You are showing signs of the proceedings of liver cancer.”

Hepatitis C is commonly referred to as “the silent killer”, and it has quite the interesting history. Today, the outlook for patients with Hep C is very good, and transmission rates are lower than ever. But it hasn’t always been this way.

The virus itself wasn’t identified until 1988, a mere nine years before my father had learned of his positive status. In most cases, Hepatitis C is asymptomatic; this allows patients to go untreated for decades, as they appear to be living a perfectly healthy life.

As more untreated years pass, cirrhosis of the liver begins to accumulate and an astonishing level of irreversible liver damage occurs while the patient lives on blissfully unaware of their condition.

Unfortunately, my father fell directly into the generation most at risk for Hep-C related deaths. Today, a simple blood test will inform a patient of their status. And although there is no cure, this can play a major role in extending the life of a positive patient. But no such test existed for the people of that specific generation.

This strain of the virus wasn’t even discovered until the 90s. In essence, these people were infected with something that didn’t even exist.

My name is Julia, and this is my father’s story.

A detailed examination of my father’s medical history traced the infection back to his post-bike accident blood transfusion, nearly 40 years prior. The doctor that had claimed to save his life may have actually inadvertently taken it away from him.

Proper blood screening techniques did not exist back in the 60s, which allowed infected blood to be transferred into injured patients. My father’s mode of transmission contrasted highly with the stigmatized views on Hep C; it was assumed by the general public at the time that only people who used intravenous drugs, had multiple tattoos, or participated in rampant unprotected sex were the ones who had Hepatitis C.

My father’s realization of his status was concerning in more ways than one. The topic of sexual intercourse as a means of transmission is controversial, but the possibility that he had infected my mother still existed.

Even more terrifying, had she been infected, it was possible that she could’ve transmitted the disease to my brother or to me. Following my father’s diagnosis, my mother, brother, and I were immediately tested.

By the grace of God, all of us tested negatively.

For months, my dad struggled with the idea of moving out of the house, as the smallest drop of blood from the most innocent of cuts had the potential to change his family members’ lives forever. But this wasn’t even the worst of it.

Although none of us were willing to accept it, my father was running out of time. A young mother struggled with the idea of losing her husband. Her two young children struggled with the idea of losing their father.

My dad was forced to make end-of-life preparations that no young adult should ever have to make. Everyone was at a loss.

How would Jan, a current stay-at-home mother, support her two kids if Dave were gone? Even more pressing, how the hell were they going to pay for his impossibly expensive medical treatments?

My father’s journey down the road of “treatment” was excruciatingly painful. He endured multiple rounds of chemotherapy and interferon, and he had to take an obscene amount of vitamins and anti-viral pills on a daily basis. The side effects of these drugs cause patients to experience “flu-like” symptoms and strong emotional deviations; in essence, with each pill he took, my father self-induced what felt like the flu every single morning. Every single morning.

Days turned into weeks, which turned into months. Which turned into years. Try to imagine what it’s like to have the flu for a decade. In addition, a botched treatment of interferon left him deaf in his right ear, a side effect that proved to be more disabling than any of us had anticipated.

He was always at the hospital, ridden with fatigue. He said that food didn’t even taste the same anymore. As the doctors fought tirelessly to slow the progression of the virus, my father still accumulated more and more irreversible liver damage.

As a precaution, he was placed on the liver transplant list, a last-ditch option that wasn’t even really viable given his condition. By the time that he had started treatment, I was old enough to realize what was happening to my father. When discussing his diagnosis, my parents were very vague and never really went into great detail, in efforts to keep their children from unnecessary distress.

But I knew something was wrong.

I was young, but I knew. I could see the life leaving my father’s previously brilliant blue eyes. He was losing hair, becoming thinner, paler…as if he were wafting away. My 6’1” father’s weight rivaled my own. On the days he did go to work, he would come home defeated, eat, and then go to sleep. My mother’s and his relationship, something I had previously idolized, was becoming noticeably strained.

Sickness has a heartless way of tearing marriages apart, of tearing families apart. It knows absolutely no bounds. Sickness is ruthless. It’s sadistic. The mere cost of treatment is enough to send most families over the edge. Financial distress placed an unbearable weight on our shoulders.

Perhaps the most disturbing of the challenges were his violent emotional and behavioral digressions as a result of the medication. The disease had literally taken the life out of him. His adventurous and upbeat spirit ceased to exist.

He was always irritable, always angry, always starting fights with the 3 of us. I dreaded our family dinners, something I had used to look forward to, because tensions were always high and issues were always magnified. My dad simply wasn’t who he used to be.

I remember constantly telling myself to be patient, that it’s just the medication talking, that it would all be over soon. But at the same time, it frustrated the hell out of me. I was watching someone I had known and loved transform erratically before my eyes.

I couldn’t just sit down and talk with him anymore. I couldn’t relate to him anymore. I honestly didn’t even know him anymore. And there was nothing I could do about it.

I hated my new irascible, petulant father.

A previously optimistic, animated, and vivacious individual now looked at life only as a grim promise of sickness, cruelty, and heartbreak. Which was a reality to him. To see my father succumb to the wrath of an aggressive virus, and to see his central being change as a result of it – it honestly scared the living hell out of me.

And I remember thinking, what is the point? Is attempting to fight off this disease really worth such a horrifically low quality of life? If the treatment did end up working, would I get my old father back, or would I be stuck with this unfamiliar, contentious being for the rest of my life?

I spent most of my nights crying myself to sleep, distressed over what was going to happen to my family. I couldn’t lose my father. Why was this happening? How were we going to get enough money to pay for everything? What were we going to do without him?

I was constantly terrorized by a series of questions a 12-year-old girl should never have to ask herself. I never slept, I was always sick, and I rarely attended school. I became seriously depressed during a very volatile point in an adolescent’s life.

Much worse was the violent rage I internalized over the injustice of his situation; he didn’t ask for any of this. He never did anything to deserve it. All he did was go to the hospital when he was hurt. 50 years ago. They were supposed to help him, and now his life is ruined.

I cursed the doctor that gave him the contaminated transfusion over and over again in my head. The age-old question tortured my mind as I got up every morning: Why do bad things happen to good people?

Now, I’m a self-proclaimed pessimist, or rather – realist, if you will. My original answer to this question would probably leave you feeling empty and confused, frightened by the frailty and apparent insignificance of human existence.

But if there’s anything my father’s story has taught me, it’s that the mere consideration of this cruel question is meaningless. To spend a lifetime scrutinizing this question, cursing it over and over again in your mind – is a mistake.

Instead of spending my father’s dwindling moments in his presence, learning from him, loving him, would it be better for me to push him away and foster rage over the unfairness of his sickness? Instead of fighting to spend these last precious moments surrounded by his family, would it be better for my father to surrender in the face of his vicious aggressor?

No. It wouldn’t be. You don’t give up. You don’t surrender.

You find the things in life worth living for and you fight. You fight like hell. You fight to find solace in the immaculate beauty of this person’s worldly existence and you fight to find peace with their presence beyond it. And at the risk of sounding cliché, his life has taught me that every story, somehow or another, always has a happy ending.

During my junior year of high school, my dad was chosen for a new clinical drug trial for Hep C patients. The risks were enormous, but we were desperate for a breakthrough. He was accepted into the program, and was administered the drugs for approximately a year.

Much like his previous treatments, the side effects were less than desirable – he was constantly lethargic and irritable. I was convinced that he was traveling down the road he’d already traveled a thousand times.

One summer night, after a long day at treatment, as my family ate our favorite Chinese takeout, my dad pulled a rather interesting fortune out of his designated cookie. It read, “Remember three months from today. Good things are in store for you.”

He grabbed a pen, wrote the date in the upper left corner, and taped the fortune to our fridge. He stared at it for a second and walked back to the table.

Later that fall, my family and I were discussing Gurley’s stellar performance in the latest UGA game at the dinner table when Dad’s cell phone started to ring. He peered at the number, abruptly got up from the table, and hurried into the other room to answer it.

What the hell? I thought. He never answers the phone at the dinner table. A few minutes later he returned to the room, looking down at his phone. He looked up, and I see tears in his eyes.

“It worked.”

“What?”

“They worked. The drugs worked.”

My heart stops. “Dad, what are you saying?”

“Jules, the virus. It’s gone. I’m cured.”

It felt like the floor has shattered underneath me. Tears streaming down my face, I ran and jumped into the arms of a man who had just won his battle.

A man who was finally set free.

I closed my eyes and took in a moment that will stay ingrained in my memory for the remainder of my days. We were free.

Later that night, I remember the fortune cookie paper. I run over to the refrigerator and frantically move aside all the papers that had piled on top of it. I see “7/21/13” scribbled in the upper left corner in my dad’s messy, unmistakable handwriting. Confused, I look back at the calendar. Wait, this couldn’t be right. There is no way. This is impossible.


Today is October 21st, 2013. It was exactly three months later. -J.O.


 

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