Clean at Last

I promised my partner that after we had our baby, I would get on treatment. A year after she was born, I got the medicine. Four pre-loaded syringes arrived with a cold pack. A month’s supply. One injection per week and a pill every morning. I stuffed the box into the refrigerator far away from the organic sweet potatoes I prepared for my daughter. I cried alone in the kitchen while my two-year-old daughter was sleeping. I’d read her a story and fed her. Would I be able to do that tomorrow, and years to come?

The hepatitis C virus clung to my liver no matter how hard I worked to stay healthy. No alcohol, healthy diet, weight management. A daily battle for over thirty years wore me out mentally and physically. I never talked about it. Not to anyone outside my close circle. A big secret. Locked away. A dirty virus from a needle user. An ex-addict. Some would say I got what I deserved. I would say I never hurt anyone but myself. I suffered and paid my dues ten times over. But like AIDS, Hep C was a taboo virus. It carried its own stigma.

I had a lot to hide as I started my new life as a mother. Other mothers would never trust me if they knew I was a heroin addict thirty years ago.

But this virus…this damn virus. So tenacious. Multiplying with every advancing year.

I enjoyed being pregnant. I took time off work to reduce stress. Enrolled in the ‘mommy and me’ yoga, took long walks along the beach, and tried pool aerobics. I loved my unborn baby with a kind of love I’d never known. It was also selfish. I was willing to risk transmitting the virus during birth. My doctor reassured me that as long as my viral load stayed low, the risk of transmission was extremely unlikely. I took a chance.

I believed that having a baby would cleanse my body. Turn me into a good woman, not of the streets but the perfect kind. It was selfish and delusional to expect my child to wipe my slate clean.

I felt guilty. I spent afternoons in the medical library at the local university reading the latest data about the risk of vertical transmission from mother to child. It was confirmed that the risk was low.

She was born in the afternoon after a long and slow delivery. To avoid spreading the virus to the baby, the doctor cut the umbilical cord within seconds. Blood sprayed out from the pressurized hose. I winced. A mistake? Where was the virus now? The baby? The chaos faded fast like looking back in the rear-view mirror, when I held her. All that mattered was in my arms.

A year after she was born, she was negative for Hepatitis C and her father was negative too. My loved ones were safe from my infected blood. It was time to start treatment.

He and I agreed that I would get on a new form of interferon called pegylated interferon in combination with a nasty drug called Ribavirin.

The medicine came with a ‘black box’ warning listing four severe, life-threatening, or fatal disorders. Severe mental health issues, including suicidal ideation and aggressive behavior. Autoimmune disorders, cardiovascular problems that could cause a stroke or heart attack. Severe infections. Life should come with a black box warning.

I planned to do the injections every Friday evening. If there were side effects, I’d be able to rest over the weekend.

I sat at our dining room table and pulled out the box and removed a syringe. It was late evening around 9:00 pm. My partner was with me to keep me calm. I unwrapped the first chilled syringe pre-loaded with the interferon and placed it on the table like it was poison. I lifted my night shirt and pinched some skin in my lower abdomen where the first injection should be done. Every week, I’d rotate clockwise to my right and then left then down to the thigh and repeat. A sense of dread and anxiety made me want to throw the syringe away and never see it again. Fearing I’d drop dead before the needle was removed. Needles were taboo and came with traumatic memories of near overdoses while on heroin. I told myself to calm down. This medicine promised to help me, promised to be a cure so I pushed it into my belly.

I made it through the first hurdle. The first injection went fine. The following week I repeated the same process. After the first month, it was a part of my routine. All the horrid side effects never came about.

My viral load was checked every month to see if I was responding. I needed a ten-log drop in my viral load within the first three months. If the viral didn’t reduce, it meant the treatment was not working.

The second box arrived.

I did everything right. I never missed a dose. Took my pills daily. Rested and drank tons of water.

The third box arrived. The results from the third month showed an increase in viral load. My doctor asked if I was really taking the medication because most patients responded, and most patients experienced side effects. I felt nothing and wondered if the medication I was getting was actually real. My doctor told me I had to stop treatment. I begged him to stay on the meds, but it was too dangerous to continue.

I was a 'nonresponder.'

The pegylated interferon charged insurance thirty thousand dollars for three months. I paid eight thousand dollars for my part that insurance didn’t cover. Caught in the dreaded loophole insurance called “Co-pay.” I did not expect insurance companies to do much for me anymore. In fact, dealing with insurance made me more stressed while facing a challenging treatment.

My virus outsmarted the drugs. My dream of being clean was over. The pain in my liver persisted, along with sleepless nights, brain fog, and fatigue to the point of nausea and vertigo.

* * *

Ten years passed. My daughter was twelve. I felt so fatigued I lost interest in most things. My answer to everything was ‘I’m tired’. My first liver biopsy showed Stage 2 Fibrosis. Fatty tissue and ‘unknown’ fragments leftover from the substance they used to cut heroin with to bulk it up. My poor liver didn’t know where to put the foreign matter, so it tucked it away all those years.

I feared transmitting the virus to my family, doctor, phlebotomists, and friends. I felt like a human contamination site. I was a toxic cocktail, and it interfered with every aspect of my life. This viral party for over thirty years wiped me out. My mother was sick with cancer, my daughter was anxious, and my husband was frustrated. We were all in a bad place. Our home was not what I hoped for.

My second Biopsy showed advancing fibrosis measured in stages. It advanced in five years from stage 2 to stage 3. No viable treatments were available. I waited.

* * *

Finally, information spread in the hepatitis C community about new antivirals that showed promise of eradicating the virus.

The antiviral medicines were in clinical trials. The initial reports showed 94% cure. It was too good to be true. To reduce my skepticism after the disappointment with pegylated interferon and ribavirin, I researched the drug cocktail for efficacy related to genotype, racial complications, age, and weight. After several months of study, research, and attending conferences, I decided to take the medication even though it was not FDA approved.

The time had come to try again. Try again to fight this beast. This time I did not have to use needles.

My doctor ordered the meds. My insurance denied coverage. I appealed. Denied. I appealed again with more evidence. Denied. I switched insurance. Tried again. Denied.

My hepatologist told me about private funding for the meds through Gilead. He wrote me a referral to Specialty Pharmacy that worked directly with Gilead and Johnson and Johnson. If I qualified, I’d get the whole treatment for free. Free. That doesn’t happen. I applied right away before the funding ran out.

I qualified. The pharmaceutical company covered the $90,000 dollar price for the medicine. I was shocked. But not completely convinced it was safe. These drugs were new, off label, and research was limited to small cohorts. But I trusted my doctor. His patients were getting better. I needed to stop the progression of the virus, which was getting worse as I aged.

The reports about these meds were astounding. They were radical. The pills wore a protective sheath that allowed them to sneak through the digestive tract and into to the liver where it would be activated by enzymes. From there, it blocked the replication site on the virus and literally stopped the virus from multiplying. Innovative and unbelievable.

I received the delivery of the first month’s supply of pills. The ‘what if’ anxiety reared its head. I was scared to take the mysterious pills that were so powerful. What if the medicine goes psychotic and starts killing my good liver cells instead of the bad ones? What if it triggers the virus into turbo speed replication, and I’ll die of fulminant hepatitis?

What were the long-term implications of this treatment? Time was not on my side. I didn’t have 'long-term.' I had to deal with this virus. Now.

That night, I sat at the dining room table with my partner. He stayed with me to make sure I would not have an allergic reaction. I swallowed the pills. And waited. We watched a show on television. An hour passed. Still alive and well. Another hour passed. We went to bed.

The medicine caused sensitivity to the sun. That was it. I bought several long-sleeve cotton shirts. A gift to myself. It was summer. My viral load dropped in half after the first month. A good start. The next month, my viral load was below 50,000. The third month - Negative. Negative. No more virus. Battles were supposed to be loud, bloody, and painful, but the drugs beat the virus without a peep.

I was perplexed. Couldn’t believe it.

I rechecked my viral load a month later. Waited for the results with anxiety, afraid it was back. Results were negative. Six months later, we checked again. If I was still negative, it was a good sign I’d stay that way. Still negative.

The pain in my joints diminished, the fatigue was gone, my mind cleared up for the most part. Most of all, I was not a contagion anymore. Though I still had the habit of telling the phlebotomist I had hepatitis C, just in case.

I enjoyed the liberation. No more doctor’s appointments every three months. No more ultrasounds, MRI’s, and radioactive liver spleen scans. No more worry about sharing a bit of cake with my family or having a glass of wine. I still had a slim chance of getting liver cancer later in life, but for now, I enjoyed the feeling of being free from the past, putting all that behind me. I got to start over. I was lighter, brighter, and giddy about everything I saw in the world. I was seeing it for the first time. Life was cradled in my arms.

I traveled with my daughter to Italy, hiked through the national parks, and helped her with high school homework. It is 2026, and I continue to be virus-free.

Clean at last.