Hepatitis C destroyed my liver, threatened my life. I’d gotten used to it.
After decades with the monster disease, a drug promised a cure. But would it work?
Jan. 26, 2016
The $1,100 pill rattled out of its plastic bottle, bounced off my outstretched palm and struck the smooth, white surface of the lavatory basin. Gravity did the rest. Before my sleep-fogged brain could direct my hands to react, it was gone, down the unscreened drain.
Cursing my clumsiness, I rummaged through a drawer for a flashlight and trained the beam down into the abyss. I could see the pinkish, diamond-shaped tablet — Harvoni, a miracle drug that cures hepatitis C — clinging to black gunk a few inches down. This was my thirdto-last dose after almost six months of treatment. I could almost reach it … My finger was on it …
The pressure of my finger dislodged the pill and it fell out of view.
I shook out another pill, carefully, and took my daily dose. Then I spent two hours in a crazed effort to retrieve the one I had lost. I made two trips to the hardware store, dropping about $40 on wrenches before finding one I could use to remove the U-shaped trap under the sink. I’m not good with tools. I struggled to loosen the nut, bruising knuckles, until I finally got the thing off, breaking the whole assembly in the process.
My efforts were rewarded with two quarters, a dime and a nickel, all coated with black slime. The Harvoni tablet was nowhere to be seen. It must have dissolved in the moisture.
I called my doctor’s office. A nurse told me that I shouldn’t be concerned about missing one dose out of 168 — one pill every morning for 24 weeks. There was some margin for error. This should have been reassuring, but the loss of the pill nagged at me.
Harvoni provides a permanent cure for hepatitis C in more than 90 percent of those who take it, with minimal side effects. But 90 percent is not 100 percent, and I couldn’t shake the thought, however irrational, that the pill I lost might have been the one that made the difference.
I would have to wait three months to find out.
Aug. 14, 2015
The FedEx truck pulled up about noon, and I signed for the package. Given the cost, I had half expected a Brinks truck. The bottle of 28 capsules, retail price $31,500, was the most valuable item in my house. It was the first of six bottles that would be shipped to me, a new one every four weeks. My copay for each bottle: $5. It had taken several months to get insurance approval, but now, at last, I could start.
In 1985, the hepatitis C virus had slipped into my bloodstream through a transfusion after surgery. For years, my immune system, dutifully doing its job, had attacked the virus, damaging my liver in the process. But the virus persisted.
I had been treated three times previously — once before my 1998 liver transplant and twice afterward. The last effort was about 10 years ago. These treatments involved a drug called Interferon, which left me so exhausted that I had to take months of medical leave from my job. Also, it didn’t work. The virus was relentless. It kept creeping back.
Tests show it hasn’t done grave damage to my transplanted liver … yet. Over the years, my doctors kept telling me about exciting research into new drugs that promised much higher cure rates without the crushing side effects of Interferon. I just had to wait. And hope that my second liver held out.
The course of the virus is unpredictable. I have no symptoms, but at any time, I could take a turn for the worse. If it suddenly starts chewing up my new liver as it had the one I was born with, I might need another transplant. I might die.
Living for decades with a potentially lethal disease, while feeling OK most of the time, requires tricky emotional contortions. If I worry about it all the time I’ll go crazy, but I can’t forget about it either.
Much of the time, the virus seems like the eccentric uncle who comes to visit and never leaves: It’s annoying, but you get used to it. The gnawing worry is simply the backdrop of my life, like a mild toothache.
At other times — when I go for my frequent blood tests, when I visit my liver specialist — I’m reminded of what hepatitis C truly is: a monster hovering just out of sight, waiting to pounce.
And now, it seems, these pills give me a real shot at killing the monster before it kills me. Perhaps I could say goodbye to this longtime companion.
Sept. 20, 2015
Last week, the nurse practitioner overseeing my treatment ordered a blood test to detect the presence of the hepatitis C virus. At last, I’ll know something.
A little over a month into treatment, I can’t feel Harvoni’s effects on my system. The pills’ side effects are negligible. My energy level is perhaps a bit lower than normal, but in general I feel fine. I’ve been going to work every day, riding my bike, hanging out with friends.
I keep wondering: Is it working? Nine out of ten, I tell myself: great odds. Yet in health matters, my track record with luck is not great.
The result would come Thursday or Friday, she said. Maybe Monday. Thursday, nothing. Now it’s 7 a.m. Friday. I wake up, check email on my phone. A new message: “You have new information in MyChart.” This is the online system the clinic uses to provide information to patients. Health care in the digital age.
Barely awake, I click the link, then mess up twice while typing my password on the tiny virtual keyboard. Finally the site loads. Yes, I accept the terms and conditions.
I click on “test results,” then open the file labeled “hepatitis C Quant RNA PCR.” (Over the years, you pick up the jargon.)
The last time I’d had this test, my “viral load” had measured in the millions — millions of virus particles in a tiny quantity of blood.
Today’s message: “Your value: HCV RNA not detected.”
The Harvoni pills had wiped out all traces of the virus. I felt relieved but not triumphant; this was the expected result. The trick would be for the effect to persist after treatment ended. I would take my last dose on Jan. 28, then get a viral load test in April. A negative test would mean I was cured.
April 20, 2016
I arrived at the Baylor liver clinic for my appointment at 11:30 a.m. My blood had been drawn a few days before, and today I would get the result. Ninety percent, I kept telling myself. Nine out of 10.
After the usual rigmarole — paperwork, getting vital signs checked — I was ushered into an examining room. I sat staring at an idle computer screen, a logo bouncing from one edge to another like a boring video game. I tried to keep my mind blank.
A quick rap on the door. Lauren Thomas, the nurse practitioner, walked in, said hi and shook my hand. Her face betrayed nothing. Thomas is competent and kind, with a Midwestern accent that reminds me of “Fargo.”
“Your blood tests from Friday are back,” she said. I waited. “You’re still negative. You are three months post-treatment, so we consider that a cure. Congratulations.”
I tried to pay attention as Thomas explained that even though the virus is gone, I would continue to test positive for its antibodies. This was interesting, but I didn’t really care. The antibodies can’t harm me. She also advised me that having had hepatitis C doesn’t confer immunity — it’s not like the mumps — so I should take precautions to avoid reinfection. (No one gets hepatitis C from blood transfusions anymore, and a common source of infection is illicit IV drug use. I am not tempted.)
“That’s it,” she said brightly. “I’ll get your paperwork, and then you’re done with me.”
I left the clinic and paid the guy at the valet stand. While waiting for my car, I texted a few people close to me with a single word: “Cured.”
My car pulled up, and I got behind the wheel. It was 1 p.m. Without thinking about it, I headed toward the office. Then I reconsidered, stopped at a nice restaurant and treated myself to lunch. Celebrations with friends and family would come later, but in this moment I was content to congratulate myself.
My server came by as I was finishing. “Everything OK?” she asked.
I smiled. “Never better,” I said.