Surviving Hepatitis C: A Personal Story
Surviving Hepatitis C — Do You Harbor this Silent Killer?
By Carol Bogart
Five years ago, a woman named Sally in Seattle called me in Ohio to talk about her Hepatitis C. She was, as I recall, nearing 70 and a retired teacher. Her niece, an adult lawyer, had taken me to lunch to talk to me about her. She said Sally was the dearest sweetest woman; one whose husband was gone, had not had children, and was now alone.
I was a columnist for the local newspaper and had been writing about my own Hepatitis C. For a year, I endured a clinical trial that was very much like chemotherapy. The niece told me Sally was afraid to have a liver biopsy, and wondered if I’d mind if her aunt called me.
As a result of my weekly column, many people you would never suspect to have this “dirty” disease often linked with injecting illegal drugs had come forward to either get tested and start treatment, or to simply thank me for giving voice to a condition about which so many are ashamed.
Like me, Sally had no idea how she’d gotten Hepatitis C. A diabetic, she wondered whether she’d been infected during a blood draw to check her sugar. I wondered whether it was a single acupuncture session for my herniated disk. I don’t remember, either, how Sally found out she had it. That I did was a lucky twist of fate.
I was symptom-free in 1995 (the liver is an “uncomplaining” organ) and covering a terrible story for a Cleveland television station. It was about a paramedic who, coming home from work, had flipped the light switch, not knowing that in the basement, the leaking furnace had filled the house with gas. A small spark from the switch triggered an explosion that blew him out the door into his backyard, burned over 75 percent of his body.
As the videographer and I swung into the parking lot at Metro Health Center, paramedics, firefighters and cops filled the waiting room and halls. Throughout the night, it was touch and go as their friend and co-worker needed so many transfusions that the hospital was starting to run out of platelets.
Two days later, the firefighters staged an emergency blood drive. I urged the TV station’s assignment editor to let me cover what was to me a poignant human interest story: the coming together as one of those whose occupations so often put them in harm’s way.
The first person I interviewed was the paramedic’s dad, a retired firefighter and, usually, self-contained stoic man. Now, with his son hovering at death’s door, he could barely hold back his tears. I talked, too, to the paramedic’s partner on the ambulance, a man so broken up he could barely speak.
When I learned that the paramedic’s blood type was O-negative, the same as mine, I set my reporter’s notebook aside – signing up on the spot to donate blood, despite my lifelong fear of needles.
God moves in mysterious ways.
Two weeks later, a letter from the Red Cross arrived. It said in bold capital letters across the top: “THIS IS NOT A LETTER ABOUT AIDS BUT … .” I was informed that my blood had tested positive for Hepatitis C and had been discarded. I was never again to give blood, the letter said, nor was I to be an organ donor. I thought about the organ donor sticker that had been on my driver’s license for many years.
A visit to my internist confirmed the diagnosis.
The paramedic made a slow recovery. I might have died but for that decision to give blood. That’s not to say I instantly started treatment. I didn’t. In 1995, despite country singer Naomi Judd’s success with Interferon for her Hepatitis C, for many, it meant terrible side effects, but no eradication of the virus. I had a young boy at home. I decided to wait until medicine could offer something better.
By 2001, though, I was feeling very fatigued. Regular monitoring of my liver enzymes – a barometer of how much damage the Hep C is doing in your liver – found that they were getting worse. My son was now 16. It was time.
Like Sally, the idea of a liver biopsy terrified me. It was, however, required of those who wanted to take part in a clinical trial being offered by the Cleveland Clinic. For the first time, those with Hepatitis C had a shot at a new “combination” therapy – a three-drug treatment it was hoped might up their odds of surviving what some call a silent epidemic.
The day of my biopsy, I was grateful to my doctor, head of the clinic’s gastroenterology department, for coming in early to hold my hand as the “routine” procedure was performed. I would later assure Sally it really wasn’t all that bad. When asked afterward if I needed pain relief, I truthfully answered, “No.”
The result, though, was pretty scary. Stage 3 liver fibrosis (scarring): bridging and portal. One stage away from full blown cirrhosis. I’d be starting the trial just in time.
For a year, I injected Pegylated Interferon into fatty tissue in my tummy once a week and took Ribavarin and Amantadine capsules every day. I lost 60 pounds and handfuls of hair and, by the 10th month, once failed to recognize a friend I saw at Kroger’s. At the same time the drugs were attacking the virus, healthy stuff was dying, too.
At night, I ached so much I couldn’t sleep. In the last month, the side effects were so bad that, with the approval of my research nurse, I started cutting back the dose of both the Interferon and the pills. It was either that, or just stop taking everything altogether.
I’d been getting the meds and supplies for free thanks to the clinical trial – a good thing because, otherwise, I couldn’t have afforded to get treated. Pegylated Interferon alone costs a fortune.
Once a month I’d drive the two hours to Cleveland to have eight vials of blood drawn to monitor my liver enzymes. I wasn’t allowed to take Advil during those 12 months (an anti-inflammatory, it could have skewed the results) – but that meant no relief for my osteoarthritis.
As I was going through my clinical trial, two very close friends were enduring what would prove to be their final unsuccessful round of chemotherapy – one for breast cancer, one for leukemia. We told each other that which we didn’t tell those we loved: We were in so much misery, we really didn’t care if we died, but we worried what would happen to those we left behind; in my case, my 16 year old son. My friends, farm wives, had both been married for more than 40 years.
Dolores and Shirley finally decided: No more chemo. One after the other, they passed away. At the end of my treatment, my blood work came back “clean.” No trace at all of the Hepatitis C. My enzymes were back to normal.
Every six months, I get the liver panel done. To date – and it’s been four years – I remain Hepatitis free. I’m a Type 2. Ninety percent of the Type 2s in the clinical trial had the same result. For Type 1’s, who are more resistant to treatment, the success rate was 60 percent. In the ’90s, when I was first diagnosed, Interferon, the sole drug available at the time, cleared the virus in only 10-15 percent of those treated for Hep C. I felt like a living miracle.
Sally, after we talked at length several times, did have her biopsy and started treatment. She’d waited too long. She died.
Dr. William Carey, my gastroenterologist, warned me often that the longer I waited, the more opportunity the virus had to “replicate” and become stronger.
Hep C is a quiet killer. Health officials estimate 4.1 million Americans are infected. Many are unaware. If you think there’s any chance you might have it, get tested. It could save your life.
For information on testing for Hepatitis C, contact your state or local health department.
Carol Bogart blogs at http://carolbogart.blogspot.com. Contact her at [email protected]