Rick Starr has a very special document framed and mounted on his wall. It’s the official letter indicating that, just six months after completing a challenging and life-altering eleven-month treatment program, his blood contains no detectable levels of the hepatitis C virus. Specialists call this a sustained virologic response (SVR). In other words, he’s cured! Rick recently shared his story with the GI Society.
Life Before Treatment
Rick is one of the 75% of individuals infected with the hepatitis C virus whose body was unable to clear the virus on its own and went on to develop chronic hepatitis C, in which the virus attacks and slowly damages the liver. Rick learned he had hepatitis C during mandatory blood testing when he began a job at a substance abuse centre, but he waited seven years before seeking treatment. During most of that time, he experienced no obvious side effects. In fact, he didn’t seem to get sick at all, even with the seasonal colds and flu viruses that affect most of the population. He would eventually learn that this was likely due to his immune system working harder than normal as it fought against the hepatitis C infection.
Rick eventually began to experience minor headaches and joint pain, but he attributed these symptoms to having worked so hard for many years on a night shift. He now acknowledges that this was a form of denial. The social stigma around hepatitis C was the main factor holding him back from seeking treatment. Rick’s turning point came when an old friend confided in him about his own diagnosis with hepatitis C and the treatment he was receiving. This encounter left Rick feeling motivated to investigate his options. He made an appointment with the closest treatment centre and, with the help of his physician and support nurse, began to plan for treatment.
Medication and Side Effects
There are six genotypes of hepatitis C and Rick had genotype 1, the most common type in North America. His healthcare team treated him with what was, at that time, the standard of care for genotype 1 hepatitis C. (Recent introduction of protease inhibitor (PI) medications has changed treatment since this time.) Rick’s treatment included the regular administration of two medications, pegylated interferon and ribavirin, as well as numerous blood tests and frequent monitoring through the treatment clinic for about 48 weeks.
Treatment was challenging. He endured months of depression and lack of mental clarity (well-known side effects) by reminding himself of these key things:
- He chose to undergo treatment knowing the side effects were part of the deal. “With choices I had freedom,” he said.
- His suffering would be temporary.
- The goal he was working toward was worth it – a life free from hepatitis C.
Rick was meticulous about logging his symptoms and treatment details. He found this activity helped him to stay positive and gave him a sense of having some control over the treatment journey. He explained, “I was in control of the ride that my medications were putting me through.”
At one point, Rick became very anemic, another common side effect, and he worried that the medical team would force him to discontinue treatment for his own safety. Rick stayed positive throughout challenges like this, constantly setting new goals for himself. These included monitoring his weight and fluid intake, consuming a nutritious diet, and exercising regularly. Sometimes swimming or light stretching were the most his body could handle, but even these activities were helpful.
Another common side effect of hepatitis C treatment is sensitivity to pain. This is especially challenging because the treatment requires regular blood testing and injections. Rick found that he was overly sensitive in every way during treatment. Extreme light sensitivity meant that he had to plan outings and activities carefully. He also felt emotionally sensitive, to the extent that he had to be selective about which television programs he watched. If they were too violent, or simply too intense, he would feel physically ill. Rick focused on staying relaxed and grounded. He made a conscious effort to breathe deeply and learned to stay in tune to the helpful clues his body gave him along the way.
It Takes a Team
Those who helped make Rick’s treatment a success included everyone from his consistent support nurse and physician to the neighbour’s dog that mysteriously seemed to know he was unwell and started visiting him to offer comfort. His support circle also included trusted friends who Rick could confide in along the way. The success stories of other hepatitis C patients inspired him onward. “It can be done and I will do it,” was an affirmation he often repeated to himself.
Rick’s support nurse describes hepatitis C treatment as “gruelling hard work by everybody involved.” Rick says that his support nurse was the number one positive influence during his care. She helped him with the practical aspects of treatment so that he could focus on managing side effects and getting well.
Before treatment, Rick lived his life very independently. This experience allowed him to understand the benefits of accepting support from others.
Now free from hepatitis C, Rick appreciates all that he has and is enjoying life. “The small things are not so small anymore. They make up life,” he said. He is currently working on a book called “How I Survived the Side Effects from Hepatitis C Treatment.” These are Rick’s key points of advice to anyone struggling with Hepatitis C:
- “It’s not important how you got this virus, but what you are going to do about it.” Do not let the stigma around hepatitis C prevent you from seeking the treatment available to you – and the chance for a cure that you deserve.
- “Get the support you need.” Request treatment from your family physician or contact the hepatitis C treatment clinic in your area.
- “Find out what a successful plan looks like for you.”
- Before starting treatment, form a support group of trusted individuals. They might be work colleagues, friends, or family members. Tell them what’s involved with treatment and how they can help you succeed.
- Be prepared to take some time away from work and other activities. This includes making a financial plan. Consider what other resources might be available to help during this period.
- Take care of that cavity now. Increased sensitivity to pain will make it impossible to undergo many dental and other minor medical procedures during treatment for hepatitis C.
By sorting out these details in advance, you’ll be able to focus on your treatment, improving your chances of success.
- “You must avoid alcohol.” Alcohol is a known risk factor for disease progression. Rick’s support nurse compared it to putting fertilizer on the virus, helping it to grow.
- “Talk to your elders.” Hepatitis C affects many First Nations communities. Rick says he found the wise words of elders in his community to be helpful. If you live in a different area, consider seeking encouragement from a clergyperson or other trusted advisor.
- “Take the steps, do the work, and don’t quit.” Make your plan, get help from others, and commit fully to your treatment and you will maximize your odds for success
Are you at risk for hepatitis C?
Consider screening for hepatitis C if you’ve…
- been exposed to an infected source
- ever shared equipment for injected drugs, including steroids
- ever snorted cocaine or shared crack pipes
- had a blood transfusion prior to 1992
- acquired tattoos or piercings in unregulated or uninspected premises, or with unsterile needles and re-usable ink
- had multiple sex partners, especially with blood-to-blood contact