The Importance of Taking Cirrhosis Medications; Hep C Patient Interview with Suzanne and Mark, part 2

FacebookTwitterLinkedInEmailPrint

Hep C patient Suzanne shares how she and husband Mark reacted quickly to a dangerous episode with her Stage 4 Cirrhosis and the important of taking cirrhosis medication.

Hep C Warrior Suzanne

Hep C Warrior Suzanne

To read part 1 of Suzanne’s experience, see link below.

Connie: To Recap your last Hep C treatment; In December of 2013, you did treatment for Hep C with one of the new Hep C treatments Sovaldi & Ribavirin for genotype 2. You received very good results, becoming Non-Detected for the Hep C virus. You achieved your SVR12 and SVR24 (sustained virologic response-reaching 12 and 24 weeks post treatment and still remain Non-Detected for the virus.)

 

Connie: When did you receive the news that you were cured of Hep C?

Suzanne: Yes, I was fortunate to get on this combination of drugs. Dr. Muir said if the viral load test showed Non-Detected that would be encouraging but if the next test at 3 months post treatment showed Non-Detected then he would considered me cured. Dr. Muir doesn’t make many calls so when I looked at the name and number I think I picked it up before it went to a second ring. The last test was done in September 2014 which showed Non-Detected.

 

Connie: We are thrilled you have been cured from Hep C. I understand though that you were under the impression once your Hep C was cured, your cirrhosis was cured or your liver would completely heal from cirrhosis, is that correct? If not, what did you understand?

Suzanne: I knew I was cured of Hep C but still had stage 4 cirrhosis. I was under the impression that the liver could rejuvenate but a lot of damage had been done. I now know the liver cannot regenerate from this stage of scarring.

 

Connie: I understand you had a dangerous experience with not taking your meds for your cirrhosis, can you share why you stopped taking your meds and the dangerous episode you and your husband Mark experienced?

Suzanne: I had 3 episodes that made me think I was going into liver failure. I felt completely normal when I laid down that night. The next morning when I woke up, as I got out of bed my legs were like rubber and I fell to the floor. Mark flew over to ask me if I was OK and help me up.

 

I walked to the office and sat down to put my contacts in. I was shaking so bad I couldn’t do it. Mark said I wandered around the house and was headed out the back door to feed our cat but couldn’t figure out how to open the door. I asked him to open the door for me and he knew something was very wrong. My speech was slurred as well. This was my normal routine in the morning. Mark stepped out for a few minutes after he put me back in the bed and I began to cry.

 

He acted quickly and called Duke and gave the PA details about what was going on and took me to my primary care immediately, which was close to home. The PA immediately said it was high ammonia levels. I had STOPPED taking my Xifaxan and Lactulose because I thought they were Hep C drugs.

 

I had two more incidences similar to that. Today, I do not miss a dose and never want to go through anything like that again. Lactulose is an inconvenient drug to take because it is a laxative but the results if it isn’t taken are far more complicated.

 

I do not drive or stay alone when I am confused or have neurological issues. Mark stays home with me when these episodes occur. The PA simply said my brain isn’t actually telling my body what to do so it’s best to always consult with a physician.

 

Connie: From the caregiver stand point, it was very important that Mark recognized what was going on and acted very quickly, and getting you medical attention. You mentioned he’s very organized and keeps all your doctor’s telephone numbers in his wallet which helps make a big difference. Great job Mark!

 

Connie: After this episode, what were you instructed by your medical team about symptoms of high ammonia levels, taking your cirrhosis medication and the importance of a special diet?

Suzanne: I was told to take my medications as prescribed and I can increase Lactulose if I feel foggy or confused. The only way to keep ammonia levels down is get them out of your system, meaning 3 to 4 bowel movements a day. I am checked every 6 months for elevated ammonia levels through blood work.

 

Connie: Has your cirrhosis meds had to be changed in anyway?

Suzanne: Yes, the Lactulose can be increased if needed.

 

Connie: Has your medical team instructed how often you are to receive blood work, and tests (what type of tests) are to be done due to cirrhosis?

Suzanne: I will receive the same blood work as they have been doing all along every 6 months, which is a blessing in itself. I will have additional ammonia levels checked at my request if I think I need them.

 

It is also important to note, Dr. Muir said an infection in the body, an example with a UTI (urinary tract infection) can also affect high ammonia levels so not every episode can be liver related. It’s important to consult a physician immediately and get blood work and exam to determine if there is an infection in the body. If so, this needs to be treated with antibiotics immediately.

 

Connie: Is there something you’d like to share with others who have cirrhosis?

Suzanne: Yes, at my last doctor visit I asked them about my life span with stage 4. They told me I was doing everything right so this wasn’t a death sentence. I am holding my own and after the recent Fibroscan I was still at stage 4. Dr. Muir only did the test this early after my Hep C treatment because I wanted it. He said he would have normally waited another year.

I would say to everyone, NEVER STOP taking any medications without your doctor’s approval. Never make assumptions on anything and ask a lot of questions and write down the answers so you can remember what you were told.

Go over your medication list thoroughly with your doctor, not a nurse or medical assistant that checks your vitals before seeing the doctor. Most importantly give the praise to God that you were able to walk away from another visit.

 

Connie: Suzanne, Thank you for sharing your experience and important proactive information. You are a Hep C Hero and Mighty Warrior! We are thankful for all you and Mark do to help spread the news about Hep C and liver disease and the importance of a proactive lifestyle. God Bless you.

 

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. To understand more of Grading and Staging of Liver Disease: HCV Advoate 

 

Related Posts:

 

The Importance of Taking Cirrhosis Medications with Hep C Patient Suzanne, part 1. 

 

 

 

 

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!

 

FacebookTwitterLinkedInEmailPrint

Website Policy

No reference links, or contact information are to be posted without prior approval from website administration.

6 Responses to The Importance of Taking Cirrhosis Medications; Hep C Patient Interview with Suzanne and Mark, part 2

  1. Richard S. September 16, 2015 at 10:43 am #

    Suzanne, thank you for your article. It seems the Mayo is more aggressive than Duke. At first they had me on weekly blood tests, then bimonthly blood tests. I finally asked them to change it to monthly. At first they rejected this, but later changed their minds. However, they told me that I would need monthly blood labs for the rest of my life. The reason I mention this is that you said Duke wants blood work up only every 6 months. Perhaps it relates more to my liver transplant?
    You are sure right about the lactulose, I use to get brain fog without it. A very necessary medication. Good job and God bless you and Mark.

  2. Connie M September 16, 2015 at 11:21 am #

    Hi Suzanne,
    Thank you again for the awesome article and sharing your experience. This is such an important topic and information for all of us to be aware and take proactive action.

    You and Mark are in my prayers each day.
    God Bless you my friends,
    Connie

  3. Suzanne September 16, 2015 at 11:40 am #

    Good Morning Richard,

    I can remember back when I was listed and weekly then monthly blood work was done. I have been doing this every 3 months so this 6 month jump was a big one because I was reassured that they were there for me and I wasn’t getting worse but holding my own as I stated earlier.

    I do remember you posting a while back about brain fog and getting lost coming home from Bible study and thought to myself I can relate to that. Luckily our church is within walking distance but did experience something similar.

    The only thing I am battling with now is loss of appetite but eat things that make my liver happy and drink supplements like Boost and Ensure and lots of water.

    I am blessed everyday when I wake up to another day and today was special because Mark’s Harvoni will be @ Duke tomorrow, yeah God!!!

    All of you together are Christ’s body, and each of you is a part of it; as Corinthians states and that is true in our church or on a website encouraging others. Richard you are an inspiration and know you will reach out to Mark when he signs in and has began treatment. I am journaling this every step of the way.

    God Bless you,

    Suzanne

    • Connie M September 16, 2015 at 11:47 am #

      Hi Suzanne,
      So glad to hear Mark’s meds are coming tomorrow. When you know his treatment start date be sure to let us know.

      Both of you remain in our prayers.
      Love & Blessings,
      Connie

  4. Beth June 15, 2017 at 8:26 am #

    Suzanne thank you for always sharing your story. You’re an inspiration to others for sure!
    Love
    Beth

  5. Richard s. June 15, 2017 at 9:34 am #

    Suzanne, a post well worth a re-read. Very important topic for all hep c warriors. Good morning Beth and all the warriors. In Christ, Richard.

Leave a Reply

Your email address will not be published. Required fields are marked *