The Importance of Taking Cirrhosis Medications; Hep C Patient Interview with Suzanne and Mark, part 1

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Hepatitis C can often lead to liver damage if undetected and not treated. Cirrhosis can result from years of liver damage. For liver patients it is very important to take cirrhosis medications and to know the symptoms associated with cirrhosis in order to seek immediate medical attention. Hep C patient Suzanne, shares her experience with stage 4 cirrhosis and how she and her husband Mark, acted quickly to turn a dangerous situation around.

Hep C Warrior Suzanne

Hep C Warrior Suzanne

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 patient’s 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.

 

Do you have Hep C and/or cirrhosis? Do you have a question about Hepatitis C or Cirrhosis?

Share your comments below.

 

To view this post or other resources, see our home page at, Life Beyond Hep C.

 

Medical references:

  1. Mayo Clinic.
  2. American Liver Foundation.
  3. University of Maryland Medical Center.
  4. American Association for the Study of Liver Disease
  5. Grading and Staging of Liver Disease; Hep C Advocate.

 

Related Posts:

 

4 Key Dietary Steps for Hep C and Liver Disease.

 

 

 

 

 

Understanding the MELD Score.

 

 

 

 

 

Facing the Future with Hep C.

 

 

 

Will you help us? Like our Facebook page at: www.facebook.com/LifeBeyondHepatitisC , share on Facebook, Twitter, Pinterest, Instagram, and Linkedin, or email to a friend, pass it on.  Thanks!

 

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6 Responses to The Importance of Taking Cirrhosis Medications; Hep C Patient Interview with Suzanne and Mark, part 1

  1. Connie M September 15, 2015 at 11:11 am #

    Hi there Suzanne & Mark,
    Thank you for sharing your courageous story with us. This is important information for all.
    You continue to be in my prayers each day. Thank you for always sharing bright encouragement to all of us.

    Many Blessings,
    Connie

  2. richard s. September 15, 2015 at 11:23 am #

    Suzanne, very informative . It seems many of us got this horrible disease from contaminated blood transfusions. You can only imagine what this did to the hemophilia community who get constant blood transfusions. Suzanne you are an example to all of us of courage . Our strength is through our Lord Jesus Christ who gives us the Holy Spirit to overcome this world. Blessed is he who comes in the name of the Lord Jesus Christ. God bless you all, Richard

    • Suzanne September 15, 2015 at 1:00 pm #

      Hi Richard and Connie,

      I have read so many stories on this website of what accelerated ammonia levels can do to our thinking as well as our bodies so my prayers are for 1 person to realize that WE never stop medications without your doctors advice. We get caught up in the joy of being cured from Hepatitis C we don’t think that we need medications that were prescribed. There remains the severely damaged liver to those of us that carried this virus for so long without symptoms.

      The Lord is my strength and through this website and my faith it can get better.

      God Bless you,

      Suzanne

      • Connie M September 15, 2015 at 2:58 pm #

        Hi Suzanne,
        Your sharing your experience has been extremely helpful in shedding the light on this important topic. We all need to realize how important it is to take care of ourselves with taking the meds we are suppose to, be proactive with asking our doctor questions and getting answers, good nutrition, balanced exercise and rest. Above all, every area of our lives are effected when we deal with a chronic condition of any kind, so we must be proactive, physically, mentally, emotionally and spiritually.

        Thank you for being a courageous Hep C Hero and woman who loves Christ.
        Love & Blessings to you my friend,
        Connie

  3. Richard s. June 14, 2017 at 11:57 am #

    Dear Suzanne, this is such an important topic. Connie, thank you for reposting it. As someone who has experienced most of these problems, it is vital for all of us to follow are doctors orders. I use to swallow lactulose by the bottle, no spoons for me. Your ammonia levels can go up to the moon. God bless all the hep c warriors with good health, Richard.

  4. Suzanne June 14, 2017 at 5:40 pm #

    Hi Connie and Richard,
    I am glad you responded and yes it is SO important to take medications as prescribed. Please ask your doctor before discontinuing any important medications; I learned the hard way.

    God Bless you both,

    Suzanne

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