Connie: Suzanne, before we begin I’d like to Thank you for being here with us this week and sharing your courageous story. You are shedding light on a very important topic that all Hep C patients need to be aware of so they can take action like you and Mark have. Let’s begin.
Connie: Suzanne, you were diagnosed with Hep C a number of years ago and testing revealed you have Stage 4 Cirrhosis. Can you tell us what tests were done to diagnose the condition of your liver?
Suzanne: I was diagnosed with Hepatitis C in 2010. I had no symptoms up until the fogginess and confusion began. My close friends and fellow employees approached me with concern.
I requested an appointment with my primary care doctor who did blood work in 2010 and broke the news to me. I was shocked. We were trying to trace back the year I possibly contracted Hep C. In the early 1980’s I worked EMS. In 1985 I had a blood transfusion. So I may have contracted Hep C through either of these periods, but none of that really mattered.
I was immediately sent to Duke (Duke University Medical Center in North Carolina) for an evaluation. I had blood work and was given a MELD score, which was high enough for me to be put on the transplant list. The virus had been in my body so long I was in stage 4 cirrhosis. They did not do a liver biopsy and strictly went by blood work and did an ultrasound to check for cancer.
Connie: The Mayo Clinic defines MELD score as the Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant. See our article: Understanding the MELD Score.
Connie: You are Genotype 2 is that correct?
Suzanne: Yes, I am genotype 2 which was beneficial for me after my first treatment failed.
Connie: Prior to your beginning treatment for Hep C, can you share about your cirrhosis?
Suzanne: I did a lot of research on cirrhosis after my diagnosis. I always related cirrhosis to someone who was a heavy drinker, which I wasn’t. I had none of the symptoms except confusion and memory loss but this turned out to be the worst nightmare and symptom of them all. I had no pain or discomfort.
Connie: Were you told you had compensated or decompensated liver damage?
Suzanne: I have compensated liver damage which I understand meaning no jaundice, ascities or varices but did have encephalopathy and from the information given to me if I had all the other symptoms listed they would have put me in the decompensated category.
Connie: Since we are discussing medical conditions related to liver disease and cirrhosis, it’s important to explain these conditions.
Connie: Defining Compensated versus Decompensated Cirrhosis: Once it has been established that a patient has cirrhosis, it becomes very important to determine whether they have compensated or decompensated cirrhosis. Patients with compensated cirrhosis do not have symptoms related to their cirrhosis, but may have asymptomatic esophageal or gastric varices. Patients with decompensated cirrhosis have symptomatic complications related to cirrhosis, including those related to hepatic insufficiency (jaundice), and those related to portal hypertension (ascites, variceal hemorrhage, or hepatic encephalopathy).
A variety of tests are run on each patient to determine the level of scarring (cirrhosis) and damage to their liver. Cirrhosis patients should be monitored regularly by their liver specialist (gastroenterologist or hepatologist).
Ascites is the accumulation of fluid in the peritoneal cavity, causing abdominal swelling.
Cirrhosis is a late stage of scarring of the liver caused by many forms of liver diseases and conditions. The liver carries out several necessary functions, including detoxifying harmful substances in your body, cleaning your blood and making vital nutrients.
Cirrhosis occurs in response to damage to your liver. The liver damage done by cirrhosis can’t be undone. But if liver cirrhosis is diagnosed early and the cause is treated, further damage can be limited.
Varices for a liver patient is commonly esophageal varices which are abnormal, enlarged veins in the lower part of the esophagus — the tube that connects the throat and stomach. Esophageal varices occur most often in people with decompensated liver damage.
The American Liver Foundation describes hepatic encephalopathy sometimes referred to as portosystemic encephalopathy or PSE, is a condition that causes temporary worsening of brain function in people with advanced liver disease. When your liver is damaged it can no longer remove toxic substances from your blood. These toxins build up and can travel through your body until they reach your brain, causing mental and physical symptoms of HE.
Connie: Has your doctor given you a current MELD score?
Suzanne: Yes, I was given a MELD score when I first began seeing Dr. Muir at Duke but do not actually know my score that was given early on after my diagnosis. I have a current MELD score of 12.
Connie: What medications are necessary for you to take and why?
Suzanne: I was put on Lactulose 15 mg three times a day and Xifaxan 550mg twice daily for encephalopathy dealing with confusion and memory loss.
Connie: Did your doctor, medical team or a licensed dietitian ever talk to you about the importance of a low sodium/balanced protein diet for cirrhosis patients?
Suzanne: Yes, upon my arrival at Duke I met with a team of nutritionists that went over foods such as red meats to discontinue. They did emphasize vegetables with a low sodium diet and high protein intake and at least a gallon of water a day, which I drink two. I buy our water verses drinking out of the faucet.
Connie: Thank you Suzanne for sharing this proactive information. Tomorrow Suzanne shares her dangerous episode and how she and Mark reacted quickly to get her back on track.
This entry was originally published on Life Beyond Hepatitis C, and is reprinted with permission.