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Patient Perspective: Receiving a Diagnosis of Hepatitis C and Cirrhosis During the COVID-19 Pandemic

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Anonymous Patient

Edgar has no relevant conflicts of interest to report.

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Released: January 26, 2022

A New Diagnosis of Hepatitis C With Cirrhosis
About 5 months ago, I went to the local community clinic for low-income people. I had abdominal discomfort and leg swelling. The providers ordered some laboratory testing and then referred me to a liver specialist. I was referred to the liver specialist because the tests showed that I had hepatitis C virus (HCV) infection and cirrhosis, and at that point, I knew something was really wrong with my health.

It took one very long month to get in to see the liver specialist, who prescribed medications for HCV treatment and water pills for the ascites. The specialist also asked me about the COVID-19 vaccine and recommended that I receive it. I had been sort of neutral on the vaccination question up to that point, but I decided to get it. I received 2 doses of an mRNA vaccine and later received a booster shot as well.

None of my medical providers told me that I was at greater risk of COVID-19 because of my liver disease, but I believe that my whole system is weakened now, so I have started wearing a mask whenever I leave the house. 

Impact of COVID-19: Telehealth and Delays
Many tests, such as an MRI of the liver, were ordered for me by the liver specialist. I had to wait more than a month for the tests, probably due to the COVID-19 pandemic. The specialist also referred me to a surgeon to discuss a liver transplant. Even though the pandemic is ongoing, I was able to have most of my medical visits face to face. I did have one visit by phone call, which worked OK on my wife’s cell phone, but I found it was much more difficult to communicate with my doctors that way.

Treatment for HCV
Because I don’t have health insurance, the clinic nurse helped me apply for the 3 months of hepatitis C treatment for free. It took several weeks, but the medicines were delivered to my house. The first 3 weeks on hepatitis C treatment were the most difficult: I was feeling extremely anxious and was unable to sleep.

My Perspective on Improving Care for Patients With Viral Hepatitis
About 2 months after seeing the liver specialist, I was able to see the surgeon. I think the hospitals and doctors are pretty booked because of COVID-19. Other than the delays, my care has been good. I realize that the pandemic poses challenges for everyone. Nevertheless, from a patient’s point of view, there are a few things I would change if I could.

First, it was hard to wait so long between the initial lab results and seeing the specialist. I had a lot of questions and was scared about my new diagnoses. It would have been helpful to have access to someone knowledgeable during that first month.

Second, when the day of the specialist appointment arrived, we had only 5-7 minutes with the doctor. My wife and I are native Spanish speakers, and although we both speak English, many of the English words used in the medical setting are not familiar to us. By the time we processed the new information, the doctor was gone. Luckily, many of the nurses at the clinic speak Spanish, but I still wished for more time to ask questions of the doctor.

Third, I didn’t receive as much information about the medicines as I would have liked. Information could have prepared me for the side effects of HCV drugs and reassured me about future management, since many pain medications are off limits for patients with cirrhosis. I later learned that some symptoms I experienced, such as anxiety and difficulty sleeping, might have been side effects of the medicines as well as grief about my condition. Luckily, things got better after the first month.

Your Thoughts?
How can communication with patients newly diagnosed with viral hepatitis be improved? Would using peer counselors be helpful, especially during pandemic-related delays? What strategies do you use in your practice to support patients who may speak English but are unfamiliar with healthcare vocabulary?

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