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VNA of Care New England

In his own words: living with cirrhosis

Karen Schroeder, MS, RD
Bob is 51, and living with cirrhosis, a souvenir of his heavy drinking during an earlier period in his life. Although disabled by his illness, he works part time with a cirrhosis support group. Here, he tells his story.
What was your first sign that something was wrong? What symptoms did you experience?
In 1991, after gallbladder surgery, I was diagnosed with what was then called hepatitis non-A/non-B, and was told that, since I'd quit drinking years ago, I had nothing to worry about. Four years later, during surgery for a vernal hernia, the surgeon discovered the cirrhosis, and also recommended a liver biopsy that turned up hepatitis-C. I had been having some stomach pain, discomfort in my right side, and fatigue. I also noticed that when a bug went around the office, I would get sicker with it than anyone else—if my colleagues got a cold, I got the flu, if they got the flu, I'd get a more severe case.
What was the diagnosis experience like?
I was thrust into a world of unfamiliar procedures and language. I found out that the Interferon I'd been on for my hep-C had actually advanced my cirrhosis. I underwent many different tests and procedures. At this point I found another doctor who specialized in hep-C and related problems, and I began to educate myself about my illness and the drugs I was taking.
I expended a lot of energy during this period fighting the health care system. The specialist I wanted to see was not a member of my health plan, but I finally was able to see another doctor.
What was your initial and then longer-term reaction to cirrhosis?
At first I panicked. I'd just been informed that I had an incurable, progressive, and potentially fatal disease. I started making out a will and looking into funeral arrangements, convinced that I'd be dead within the year. I also entered therapy and underwent grief counseling, and finally reached the stage of acceptance of my illness and my prognosis.
How do you manage cirrhosis?
Right now I am simply under observation.
Did you have to make any lifestyle or dietary changes in response to cirrhosis?
I have tried to make changes in my life so that I'm doing things that are healthy for my liver. I had already quit drinking years before. I watch my diet, get exercise, and take care of my stress. I avoid things that could damage my liver, like smoking, exposure to gasoline, diesel, or paint fumes...even hair spray. Remember that your liver processes anything you breathe, eat, or drink. As a result of the changes I've made, my physical condition has improved to the point that a liver transplant could be an option for me.
Did you seek any type of emotional support?
Most of my family and friends found other things to do. Some of this was owing to a lack of information about hep-C and cirrhosis, and some of it was caused by my assumption that I was dying—they didn't want to watch that. But I joined a support group for people with hep-C, and they helped a lot.
Does cirrhosis have an impact on your family?
It has a huge impact—I am unable to participate in family activities these days.
What advice would you give to anyone living with cirrhosis?
Take care of your liver. The transplant list is long, but a lot of research is being done on this subject. Remember that the liver can rejuvenate itself, given an opportunity to heal—a diagnosis of cirrhosis is not a death sentence, it just means a change.
Remember that you are the most important person on your health care team. You make the final choices in all tests, treatments, and medical decisions. Get second opinions, mental counseling, and look into all aspects of whole person wellness. The life you save may be your own.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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