Journey Back to Health After Hepatitis C

When Kasey Jones, 37, a drug and alcohol counselor who now resides in Seattle, found out that she had hepatitis C in January 2022, her first reaction—like many who receive this diagnosis—was shock. Yet, the diagnosis of this condition, which can cause serious inflammation of the liver and lead to permanent damage to it from cirrhosis, did help explain some seemingly subtle, mysterious symptoms she’d been dealing with for over one year.

“I was four years sober at this time, and I started having strange digestive issues,” she shares. “To be very frank, I was having a hard time going ‘number two,’ and I thought, ‘This is not normal.’” Jones admits to using drugs before she got clean in 2018, including injecting heroin and meth via IV needles—an activity that happens to be one the biggest known risk factors for becoming infecting with the hepatitis virus, according to the National Institute on Drug Abuse.

In addition to unexplained GI struggles, Jones experienced crippling, chronic fatigue. “I didn’t have the energy I should have as a woman in my early 30s, who’s also in recovery,” she says, adding that she was regularly going to the gym at the time of her diagnosis and eating healthfully, too. “That’s what prompted me to look into more details about my health.”

A Jaw-Dropping Diagnosis for a Mom of Three

At that time, Jones was living in California and had a new primary care physician. She ordered a full blood panel, testing for diseases like HIV and hepatitis C—even though Jones thought she’d already had all those tests done. Which is why she was shocked when her HCV (hepatitis C virus) antibody test rang up as reactive, which meant one of two things: that she either currently had it, or previously had been infected and had been treated for it.

Jones couldn’t believe it. “I was like, ‘So, I’ve had this for how long? I’ve had three kids while I’ve had hep C?” Even the obstetrician who delivered her babies knew how she’d been a drug user and that she was in recovery—but never thought to test her for the bloodborne virus. Her new doctor estimated that she’d likely had the virus for seven years and like many with hep C, simply never knew it.

After finding out that she had the virus, her husband and children got tested. Remarkably, none of them contracted hep C. “It’s just mind-blowing,” says Jones. “My kids are C-section babies, so they’re literally exposed to my blood as they’re taken out of my tummy.” She’d breastfed two of her children and had shared razors and toothbrushes with her spouse—all of which are ways the virus can be transmitted.

Identifying the Right Treatment

Jones spent the next few months undergoing various tests and screenings ordered by her physician—and waiting for the results, which would determine her treatment.

“I had blood work done every couple of weeks,” she recalls. That February, she had an ultrasound done on her liver to see if any scarring or cirrhosis had developed. “I do have some [scarring], but it’s minimal,” Jones says.

After her ultrasound, she had to go back and get more blood drawn to pinpoint which hepatitis C genotype she had. Doctors need to know the genotype, or genetic variation of the virus, to determine what medication will be most effective in eradicating the disease. Currently there are eight known hepatitis C genotypes, with genotypes 1, 2, and 3 being the most common in the United States.

“So of course, I had genotype 3, which has a lower percentage of healing, or of being cured,” Jones says. It’s true: Research suggests that this particular genotype has been classified as difficult to treat compared to some of the other hep C variants. Genotype 3 is also linked to higher rates of liver complications, such as fatty liver disease and hepatocellular carcinoma (liver cancer).

“I was like, ‘Oh, great, here I am, doomed again. But also, what do I need to do next?’” By March 2022, her PCP referred her to a gastroenterologist, who assured her everything was going to be fine. He told her she didn’t need to make any drastic changes to her life or routine, she just needed to start medication. He prescribed Epclusa (sofosbuvir and velpatasvir), a drug that’s approved to treat several chronic HCV genotypes. “I took one pill a day for 12 weeks, and at the six-week mark, I had blood work done so he could see if the medication was effective,” she says.

Jones remembers her doctor examining her ALT and AST enzyme blood levels. If they’re below a certain threshold, that means your HCV is non-reactive and you’re on your way to being cured, she says. “At the six-week mark, my blood work came back and it was under that number that he wanted it to be. He said, ‘You’re looking great. Keep it up.’”

Her digestive symptoms improved almost immediately after starting the medication and, after a couple of weeks, she started to feel more energized. Jones didn’t miss a single dose during her 12-week treatment. She knew her life quite literally depended on ridding her body of this disease. “You can die from it if it’s not treated,” she says.

Recovering From Hepatitis C

While Jones hardly experienced any side effects, that doesn’t mean that everyone will have the same experience. “I felt great [on the medication],” she says. “For me, it was just fatigue. But I had a girlfriend that took the exact same medication [about] six months before me and she had a 102 fever, was in bed, wasn’t at work, all these things. I didn’t have any of that.” Her friend had a different hep C genotype than she did, which can also influence how well you fare during treatment.

“I thought [treatment] was easy,” Jones adds, but she also attributes her positive mindset to her smooth treatment. She remembers thinking, “I have a really good foundation with four years of sobriety … I know how to handle stressful situations. I’d been taught that in my [drug] recovery.”

That June, after she completed treatment, her gastroenterologist told her she was cured of hepatitis C. “He hugged me and made me feel loved, and like I wasn’t contagious or all that stigma that comes around with infectious diseases,” Jones says. “He just made me feel really comfortable and he was super happy for me. I had the kids with me, and they were cheering.”

The last thing Jones had to do to confirm that she was free of the disease was get a follow-up blood test in September 2022. By this point, she and her family had just moved to Seattle from California, so she saw yet another new primary care physician. Her viral load remained low, with her PCP confirming she was cured of the disease.

Despite this reassurance, Jones continues to get this particular blood test done annually, just for good measure, she says.

Learning to Advocate for Herself

Early on in Jones’ recovery from drug addiction, she says she wasn’t in a mental space to advocate for her health like she was when she got diagnosed with hepatitis C. “I always wondered if something was actually wrong with me,” Jones says, thinking back to her first few years of sobriety. “I had blood work done during [drug addiction] treatment, and they did not get enough of my blood—I was supposed to go back, but I never did.”

For anyone going through a similar experience, Jones recommends doing your own research (but only on medically vetted websites like Hep C Alliance) ahead of your doctor’s appointment, and to come prepared with questions. “I came into the [doctor’s office] with 20 questions and wanted all of them answered,” Jones says. “Who else is going to advocate for me besides myself?”

But she also emphasizes how important it is to have support. She has a strong network of sober people, loving family members, and friends who supported her during her hepatitis treatment. “Surround yourself with like-minded people and forget the people who can’t support you,” she says.

Community can be found in virtual spaces, too. Jones joined several liver and hepatitis C support groups on Facebook, as well as online forums created by the American Liver Foundation. She also had friends in her drug recovery program who’d already been treated for hep C; she found it helpful to hear about their experiences with treatment. Luckily, most of the people she talked to were cured after just one round of medication, the same one she took.

Jones also wants those recently diagnosed with hepatitis C to know that they aren’t alone. You don’t have to go through this by yourself, she says, and it doesn’t make you a bad person just because you have a difficult disease. Ignore the stigma. “You don’t have to be a statistic. You don’t have to be a label,” she says. “We’re just people trying to figure out the best way to be healthy. My past does not determine who I am, or what I am, today.”

If you can reach out and make a doctor’s appointment, it could save your life, she adds. She started documenting her journey on TikTok because she didn’t want to go through treatment alone, and she wanted to help others. “My journey might’ve been completely different if I had just kept it inside.”