When faced with hepatitis C treatment for the first time, most people have some anxiety or apprehension. Some people have a lot of it, so much so, that they might lose perspective. For instance, I recently talked to someone who was reluctant to take hepatitis C drugs because she was afraid she’d lose her hair. Her looks are important to her. I reminded her that ascites, jaundice and hepatic encephalopathy are quite unattractive too. Then there are the 53 daily deaths from hepatitis C; more we count premature death from heart attack, stroke, and cancer.
Of course, when it was time for me to undergo hepatitis C treatment, I was no more immune to fear of side effects than the next person was. In 1997, I had never spoken to another person who had undergone hepatitis C treatment. This was before there were support groups and chat rooms. All I had to go on was what I read in the prescribing information.
The side effects I feared most were mood alterations—depression, irritability, thoughts of suicide and the like. I had a history of depression, and didn’t want to expereince that ever again. A week before my scheduled start date, a well-meaning friend called me, deeply concerned. There was a famous local case about a man who had undergone interferon treatment for hepatitis B. Apparently he killed his wife, then himself. My friend told me that some patients experience nightmares and personality changes. I thanked her for the concern but privately dismissed it. I was going to be different.
Although I thought I had brushed off her warning, the reality was that I had merely buried it. The night of my first injection, I prepared for battle. Next to my bed were blankets, pillows, and socks for chills, crackers for nausea, water and acetaminophen (Tylenol) for fever and discomfort, and the phone for emergencies. I injected the medication into the soft fat below my belly button, and then my husband and I went to bed. He fell asleep in his usual way—as soon as his head hit the pillow. I tossed and turned, waiting for side effects and for my life to change.
My friend’s forewarnings must have been lingering closer to the surface than I had initially believed. I drifted in and out of sleep, dreaming about Jekyll and Hyde. I’d wake up haunted by my fears of a medication-induced transformation. What if I killed my husband and then myself? The fear was intense but logic took over telling me that it was very unlikely that I was going to turn into a homicidal psychopath after one injection. My ridiculous imagination and capacity for drama amused me, and I burst out laughing. Laughter chased away fear, and in that moment, I was liberated from my inner tormentor. I let go of anxiety and fell into a deep sleep.
A few hours later I woke up with flu-like symptoms. I alternated between throwing off bedcovers and clothes to piling on blankets and wearing socks on my hands and feet. I took a low dose of Tylenol and slept fitfully. In the morning, I had a minor headache, but otherwise felt fine. My husband, however, woke up with a migraine and couldn’t get out of bed. Relieved that I hadn’t murdered him in the night, I ended up caring for him that day—cooking, cleaning, walking the dog, and occupying myself with the usual Saturday chores.
I’ve done three hepatitis C treatment, worked at Stanford Medical Center with patients on treatment, and have helped countless others. Here is what I’ve learned:
- Support is essential. (The Hep Forums offers a great place for support.)
- Treatment is tolerable, and you don’t have to be exceptional to get through it.
- Most side effects are manageable, particularly if you deal with them early and work with someone who knows how to help you manage them.
- Although HCV treatment isn’t easy for everyone, most people find it isn’t as difficult as they imagined it would be. Generally, the hardest parts are intermittent, brief and manageable.
- After treatment is completed, you eventually get your life back, even though it takes some time.
- Humor can make almost anything bearable.
Lucinda K. Porter, RN is the author of two books, Free from Hepatitis C and Hepatitis C Treatment One Step at a Time. She also blogs at HepMag.com.