Some health issues knock you off your feet. Others creep up so slowly you barely notice them until you’ve been living with them for a while. For Scarlet Hartwell, hepatitis C was one of the creepers. Hepatitis C is a virus that can affect the liver, causing devastating effects if left untreated. Most people use supplements to help support vital organs in the body, with most liver supplements containing herbs, roots, and extracts which encourages optimum liver health. Unfortunately, in Scarlet’s case, it was too late for preventative treatments and this is all about her long journey with hepatitis C.
Now 63 and living in Utah, Scarlet’s trouble started back in the late 90s.
“I didn’t really feel anything except kind of tired a lot of the time,” she explains. Scarlet was partying with friends quite a bit back then and thought it might be related to that. Just normal fatigue from staying out late and drinking too much.
That changed in 2000 when one of her friends described how a problem with her liver was leading to extreme fatigue. Shortly after that, the friend passed away from a ruptured esophagus.
Worried about her own health, Scarlet decided to see a doctor.
She asked him to test her for hepatitis. Unfortunately, her fears were founded: her blood tests came back positive for the hepatitis C virus, which causes an infection of the liver.
After a gastroenterologist performed a liver biopsy to confirm the infection in early 2001, he recommended she start a treatment regimen of taking two ribavirin pills in the morning and four at night, as well as peginterferon injections three times each week.
“I still didn’t really know what it was and I didn’t know how to use a computer,” says Scarlet. Desperate for information, she sent her sister an email asking for help. Fortunately, her sister was able to connect her with a woman in Arkansas who had been diagnosed and treated for hepatitis C.
“She told me that I would feel tired and nauseated and how hard it was going to be, but I needed to keep taking the shots,” says Scarlet. “She was a little older than me and had some cramping and leg problems from interferon.”
For Scarlet, the effects were a little different. “I would get a little bit of an itchy rash, my eyes felt kind of crusty in the morning, and my memory was very poor,” she explains. Side effects weren’t the only challenge she would have to face. Because it’s a blood borne virus that is often associated with intravenous drug use and sexually transmitted infection, hepatitis C carries significant stigma. Even though Scarlet had passed a hair follicle test proving she hadn’t used drugs within the last 3 or so months, this stigma was still held over her.
“When I first started treatment, my boss gathered my coworkers at the aerospace manufacturing facility where I worked and told them I’d be going on medical leave. I brought pamphlets that came with the medicine and passed them out and told people I wasn’t contagious to them, but if they wanted to know more they could read about it. Then I heard through the grapevine that one of my coworkers didn’t think I should be doing the job because I could cut myself and infect the whole workshop. I decided to keep bandages and rubbing alcohol at my workspace just in case,” she says.
Scarlet’s lab results showed no detectable levels of the virus in her blood after six weeks of treatment, but the good news would be fleeting: the virus returned several months later.
Hepatitis C wasn’t the only thing Scarlet struggled with.
Over the years, she had become an alcoholic. At the time of her first treatment, she had yet to give up drinking.
“I thought it didn’t work because of my alcoholism and I didn’t get back on treatment after that. I went on my with life and kept drinking and was basically in denial, even though I knew I had hepatitis.”
A few years later, she had a change of heart and decided to start treatment again. When she went to see her gastroenterologist, he took another biopsy and found that she was now experiencing cirrhosis of the liver.
“I had to confess to the doctor that I had drank throughout treatment and that was really hard because I knew it was like putting water in a bucket with a hole in it,” she says.
Nevertheless, she was able to get back on a combination of ribavirin and peginterferon – this time, she only had to take one pill each a day and perform an injection once a week. She cleared the virus after six weeks, but once again, it returned after six months.
“The doctor thought that drinking during the treatment wasn’t helping, but it probably wasn’t the reason it kept coming back,” she recalls.
At that point, Scarlet was ambivalent about further treatment. It was expensive, required her to take three months off from her job, and always seemed to end in discouragement.
To make things even more complicated, she was diagnosed with hemochromatosis, a hereditary disorder where the body absorbs too much iron from food, which can lead to poisoning of the liver, heart, and pancreas. She had to have a pint of blood taken every two weeks for six months before her iron levels returned to normal.
Scarlet had a major breakthrough when she achieved sobriety in 2008, something she’s held onto to this day.
A few years later, she began noticing television commercials for hepatitis C treatments, which she says, “made her feel less like a leper, less stigmatized.”
Those advertisements prompted her to talk to her doctor in 2014 about starting treatment once more, hopefully for the last time. At that point, her blood tests showed she had an extremely high viral load: 240 million IU/mL. In September of that year, she began taking a daily combination of Sovaldi® (sofosbuvir) and ribavirin, a regimen she continued on for the next six months.
After five weeks, her blood tests showed she had cleared the virus. This time, it didn’t return and hasn’t since she completed her treatment in March, 2015 (she continues to visit her doctor every month to make sure).
Scarlet still doesn’t know exactly how she contracted hepatitis C. “A lot of people think you only get it from needles or drug use, but that’s not the case,” she says.” I didn’t get any tattoos or blood transfusions. An ex-boyfriend called me years later and told her he had it too, but we’re still unsure who might have had it first.”
Diagnosed with #HepatitisC in the 90’s, Scarlet remains hopeful about her long term health. Check out her story:Click to tweet
Her message remains the same: it doesn’t matter how you got it – you have to deal with it.
Since she started attending Alcoholics Anonymous support groups, Scarlet has met many other people with hepatitis C.
“I let people know that if they have it, I would be willing to talk about it. I remembered the feeling of not knowing what it was, but I had a friend to help me, so I wanted to do the same,” she says.
She’s also joined online discussions and found resources offered by the American Liver Foundation to be very helpful. These days, she focuses on taking care of herself and likes to spend her time walking and hiking the trails around her home. Her favorite excursions are the ones where she gets to bring along her friend’s dog, Peaches.
Scarlet remains hopeful about her long term health and encourages others to be the same:
“Now that the new treatments are out, if you’ve been waiting for something gentler that you can handle – it’s here. The side effects are much milder. New things are coming out all the time – if you’ve been waiting, start now. The longer the virus attacks your body, the worse it becomes. Stay informed and talk to your doctor.”