In the fall of 1999, I woke up with a strong metallic taste in my mouth.
It didn’t matter what I ate — sweet, spicy foods or plain white rice — the aggravating sensation of iron filings wouldn’t leave. Internet searches proved pointless. Doctors told me they hadn’t heard of metal mouth, my nickname for it, and told me to get an upper-GI endoscopy.
Before my taste went south, I had asked my doctor to test my blood for hepatitis C. Why request the test? I can only guess. I had recently undergone surgery, and while in the hospital I had heard of hep C, which can cause a host of serious liver problems. Had hypochondria set in? I really don’t know.
Within a few days, my physician gave me the result: Negative for hep C.
Five months later, though, my sense of taste was getting worse, with no relief from the bitter taste of metal. Food held no appeal, and the right side of my body ached. I was in a specialist’s office, setting the date for an upper gastrointestinal screen. He scanned my health record and said, “I see you have hepatitis C.”
I went blank. I panicked. “How could that be? My blood test was negative.”
But it was true: The first doctor had misread the results.
I was diagnosed while in my 40s. I checked out my prognosis, and it was terrifying.
The hep C virus inflames, scars and can eventually destroy the liver. I could develop cirrhosis, an irreversible scarring of the liver, and liver cancer. Both diseases can lead to death. Hep C also is one of the most common reasons for liver transplants.
A bleak future seemed in store for me.
The millions of people infected with hep C come from every socioeconomic class. Health-care workers, transfusion recipients, IV drug users, those with tattoos and anyone who has had contact with blood are at risk.
How did I get hep C? I hate that question. As I’ve told the five doctors who have treated me since I was tested, I’m not a drug user, I have no tattoos, I did not engage in unsafe sex with multiple partners.
How did I get hep C? I’ll never know.
Baby boomers represent the largest number of cases. Since 2012, the Centers for Disease Control and Prevention has recommended that anyone born between 1945 and 1965 get tested. The blood-borne virus was discovered in 1989, and it wasn’t until the early 1990s that blood banks tested for it and medical and dental practices changed protocols to prevent its transmission. Unsterilized medical and dental tools can spread hep C. Even sharing razors, toothbrushes and nail clippers could spell trouble.
The CDC estimates that 3.2 million Americans are living with chronic hepatitis C — and half or more of them don’t know it. Symptoms can take decades to surface, and by then the liver damage may be beyond repair. There’s no way to track how long I had the disease before I was diagnosed. My symptoms — the metallic taste and abdominal aches — were relatively mild, but the results of my blood tests were damning.
My viral load, which shows the amount of virus in my blood, was off the charts, as were enzymes signaling the extent of inflammation of my liver. A liver biopsy disclosed scarring, which indicated the beginning stage of cirrhosis.
I interviewed doctors for their opinions. Their advice boiled down to this: “Wait five years to see if a new drug gets developed, get in an experimental drug trial or begin the current combination drug treatment.”
I chose treatment, specifically three self-administered interferon injections each week and two ribavirin pills each day, for a year. The drugs worked in tandem to fight the infection and to prevent the virus from replicating. The success rate was low — 45 to 70 percent — and the side effects plentiful, but I was ready to risk them for a possible cure.
The evening of my first interferon injection, I was petrified. I held my breath and plunged the needle into my thigh. I swallowed the first pills. The night passed without incident. The side effects began a couple of days later: blinding headaches, low-grade fevers, body aches and nausea. I tried to maintain a sense of normalcy. I had dinner with a friend and came home feeling queasy.
Then the vomiting started. Feeling dehydrated and still heaving after two hours, I went to the ER. I was handed a bedpan and a glass of water. I drank, and within minutes I was at it again. The nurse sedated me to calm my stomach spasms. I spent the night getting IV fluids. My doctor instructed me to halt treatment for a couple of days. I didn’t. I was afraid that any break in treatment would render it ineffective. I was determined to beat hep C.Needless to say, it wasn’t pretty.
When I was first diagnosed, telling people I had hep C produced mixed results.
One time, after booking a massage, I informed the therapist that I had hep C. She wouldn’t touch me. I tried to tell her that the virus wasn’t spread by casual contact. It didn’t matter; she left the room.
When I called my dentist to cancel my annual checkup, he told me not to worry and come in. When I arrived, the dental hygienist was suited up with protective gear. I understood the precaution, but I felt embarrassed and ashamed. I had come face to face with one of the facts of my disease: My blood was infectious.
I had my blood monitored every month. In the beginning, the results were hopeful. My liver function got close to normal and my viral load dropped. I continued to battle the side effects. My hair fell out in handfuls. I became anemic. My heart pounded when I walked or did simple tasks. The interferon also affected my mind: Depression, anxiety and insomnia plagued me.
Nine months in, the hep C virus was still active. I had plateaued. Because I was 20pounds lighter, pale and weak, my doctor stopped treatment, telling me that it wasn’t working and that the side effects I was having were too dangerous. I left his office feeling defeated.
I thought back to our first encounter, when he had joked, “I want you to die by falling down the stairs when you’re old, not from hep C.” But now, my doctor ended our relationship by saying, “Wait five years.”
My viral load shot back up and my liver inflammation rose, bringing me closer to cirrhosis. I was easily exhausted and hyperalert about every ache and pain. I began to worry about liver cancer. I saw therapists for depression, acupuncturists, herbalists and Reiki healers. I ingested daily supplements of milk thistle and other herbs that supposedly help strengthen the liver.
I watched comics portray hep-C people as junkie scum: “What’s a heroin addict’s favorite drink? Hep C.”
I felt like a pariah in a paranoid and ignorant society.
In late 2005, overwhelmed with fear and anguish, I took another shot at killing the virus. The Food and Drug Administration had recently approved a type of interferon shot that could be given once a week and would keep a stable level of the drug in my system. My new liver specialist assured me that my liver would at least get a break from the inflammation and scarring, even if the treatment failed.
The side effects began within 12 hours, and they were every bit as bad.
I isolated myself. Every day was a mental and physical struggle. I was working but barely making it through a day. I put off having monthly blood tests: I hated the needle draws and hated hearing that the virus was still in my blood.
After finally going to the lab one day, I got a test result that I’d been dreading. My red and white blood cells had tanked, knocking out my immune system; I was at risk for a major heart attack, and my doctor ordered me to the hospital immediately. I signed in, so weak that I couldn’t stand up. I underwent a blood transfusion to boost my red blood cell count. Although my white blood cells were so low that any nasty germ could have easily brought me down, I was admitted to the infectious-illness ward. I was horrified and demanded to be moved. When that didn’t happen, I signed myself out against hospital recommendations.
This second round of treatment ended after only six months. Again, I was told to wait five years until a new drug had been developed.
By 2013, I had accepted the idea that hep C would kill me. My blood tests still showed high viral counts and liver inflammation. My platelet count was low, my blood wasn’t clotting normally, caused by liver damage. My mind was becoming foggier. I gave myself a year.
And then a miracle arrived.
A friend had participated in a new hep C drug trial that, amazingly, had rid him of the virus, and I had been following his progress. When the FDA approved that drug under the brand name Sovaldi in December 2013, I leapt at this chance for a cure. The odds were good: for some groups of patients, the cure rate was 75 to 95 percent.
In March, I started on a new drug regimen. I would still inject interferon and take ribavirin, but I would add a daily dose of Sovaldi. The treatment this time would last a mere 12 weeks.
Within hours of my first injection, the side effects began. Along with nausea and hammering headaches, my eyesight took center stage. I was hypersensitive to light, and bright lights flashed on and off in my left eye. A retinal specialist told me that I was close to having my retina detach, another interferon side effect. I had to wait it out and hope it didn’t worsen.
After a month of treatment, my viral load was tested. I was elated to find that my hep C count was undetectable — no sign of the virus. Only eight more weeks to go in the treatment. But soon my red blood cell count dipped and anemia kicked in. I was losing a lot of weight and feeling exhausted. Finally the treatment ended, and when I went in for tests, I was still free of the virus.
Before the doctors would declare me cured, I had to get over one more hurdle: a check of my blood three months after I finished treatment.
I waited for the phone call that would give me bad news. It didn’t come. Instead, I visited my physician’s office and learned that I had achieved SVR — sustained virological response — the medical term for cured. It was the happiest day in my life. I felt reborn.
There’s been a lot of coverage in the media about how expensive Sovaldi is, at $1,000 a pill. Anticipating high costs, I switched to a health insurance plan that covered the drugs I needed with the lowest possible deductible. My policy wasn’t cheap, but it was worth it. My plan covered most of the $100,000 course of treatment. My out-of-pocket costs were less than $3,000.
It will take another year to rebuild my liver, or what’s left of it. I’m still taking vitamins and liver-support supplements. I eat well and exercise. Life is starting to get back to normal. After 15 years of being poked, prodded and shunned, I’m free. Every day feels like a gift. I can’t help myself from sputtering cliches: It’s a wonderful life.
Addabbo is a documentary filmmaker who lives in Washington.