Hepatitis C: Family, Career, and Successful Treatment

An Interview with Mike

Have you ever wondered how a medical professional would deal with a diagnosis of hepatitis C and the treatment process? Maybe they have access to special knowledge that makes their treatment somehow different. In reality, the men and women who treat us often must struggle through the same ailments and they do it the same way as everyone else. In this interview I corresponded with Mike, a licensed nurse, who shares his experiences with hepatitis C. It's a great story of support and endurance that shows how positive an experience that treatment can be.

How did you know you first had hepatitis?

I was employed as a dialysis nurse in the early 1990s and everyone on the staff was screened for HIV and hepatitis B yearly. One year they added a test for hepatitis C, but I never worried about being tested or anything. I was, as I suppose most people are, very surprised when I turned up positive for hepatitis C. Also, like most people, I really didn't know much about hepatitis C and for a while I thought that I had only been exposed to it and didn't have the disease because I felt fine and had no symptoms.

Do you remember your reactions to your positive test?

I was very overwhelmed at the time. I had a hard time coming to grips that I could have such a thing, seemingly out of nowhere. It was kind of like "one day I was fine and the next day my whole world was turned upside down." Since I really didn't know much about hepatitis C, like most people, my doctor gave me quite the education on hepatitis C, and shortly thereafter I had a liver biopsy.

Tell us about the biopsy. Many people think it's a big ordeal. What was your experience?

Both of my biopsies were completely uneventful. Being a nurse, I was very familiar with the procedure so I really wasn't nervous. I was apprehensive about what the results would be, as I'm sure most people are in that situation.

Both times the biopsy was not painful at all.

As a nurse, do you think your experience with hepatitis was easier or harder?

I think it was much harder. There is something to say for "ignorance is bliss". Being a critical care nurse for the majority of my career, I had lots of experience caring for patients who had severe liver damage and/or failure, so I was very afraid of ending up like that and dying a slow agonizing death. I was afraid of becoming dependent on others for care and not being able take care of myself. I also knew by then the poor likelihood of being successfully treated. I became severely depressed and it took me quite a while to "shake it off".

I did it by taking some of my own advice. I used to run a clinic for patients who had end-stage congestive heart failure. Many, if not most of my patients, had various levels of issues with questions of "why me, I don't want to take these medications or restrict my salt intake, this isn't fair, how did this happen, etc." I used to say that we could talk all week about how unfair all this is, or that you are a good person, or that it stinks to have to modify your lifestyle and take medications and treatments, but in the end you still have congestive heart failure, so what are we going to do about it?

In the end, you either make your peace with what you have and get on with living your life, or you spend the rest of your life being consumed by your situation and being miserable. So I decided that I wouldn't let hepatitis C consume my life and I made my peace with the fact that I had a potentially life-threatening disease, and I would try to live my life the best I could.

That's great advice, Mike. It sounds like you were able to quickly control your emotions and create a positive outlook. Can you offer any advice for others who may have trouble with this?

Actually, it took a while to get to that point.

Initially I was very overwhelmed at the prospect of possibly having a fatal disease. After about a year, I decided not to fight the things that were beyond my control. I'm not a religious person so faith or religion were not things I considered. I did have a very close friend of mine who at age 36 was diagnosed with terminal colon cancer who died about halfway through my treatment. He never once complained about his particular situation and handled his life with such grace and dignity, that it truly inspired me and helped me to make the most of what I had. My advice to others would be not to project events too far into the future, you really don't know how things will ultimately turn out. I'm living proof of that. Spend your time doing the things that are important to you.

Can you describe your treatment options? Did you feel you had a choice to treat or not?

At the time of my diagnosis, the only treatment available was interferon and it was not very effective for treating my genotype, which was type 1a. Fortunately, my biopsy wasn't bad (Stage 1, Grade 2) and I had normal liver enzymes. My GI doctor at the time told me that he would recommend not treating for the present as he felt that I had time to wait for better treatments. From then on, I had my liver enzymes checked three times per year and I stopped drinking alcohol. Years passed and as time went on, I pretty much put hepatitis C on the proverbial back burner and didn't think too much about it, which was pretty easy as I continued to have no symptoms and my enzymes remained pretty normal. In December of 2006 at one of my routine blood tests, my liver enzymes shot up to 5 times the normal level and I had been feeling tired. I ended up having another biopsy which showed a substantial worsening of my liver (now Stage 2, Grade 3). The GI doctor (a new one) told me that if I didn't go on treatment (which now consisted of combination treatment with ribavirin and pegylated interferon), I probably had about 5 years until I developed cirrhosis and end-stage liver failure. At that point, I really felt I had no choice but to try treatment.

Can you describe your treatment progress?

It was worse than I could have ever imagined. I had pretty much every side effect. For starters, I had fatigue on a level I didn't think was possible. All I wanted to do was sleep. I was working in Interventional Radiology at the time and I wear a lead apron almost all day. It was very difficult for me at work. I was very fortunate to have a wonderful boss and very supportive co-workers who allowed me to rest at work when I needed it, let me go home early, take days off when needed, and generally do whatever they could to help me. My family was also very supportive. They did chores around the house for me and let me sleep all weekend and generally made everything easier for me.

My side effects got worse as treatment went on. I got a horrific "ribavirin rash" over my entire body that itched so bad I thought I would lose my mind. This in turn got infected with MRSA (Methicillin-resistant Staphylococcus aureus) so I was on antibiotics for 3 months. The antibiotic I was taking, tetracycline, makes you sensitive to sunlight, so I had to stay indoors most of the summer. Now in addition to feeling like crap, I looked like it too! I had daily low-grade fevers and joint pain. I used to tell people, "you know that feeling that you get right before you come down with a bad cold or flu: that aching body, low-grade fever, and joint pain?" That was my daily baseline.

Your treatment was successful (yes!), how was the experience?

It was very weird, in that I really didn't expect it. I was afraid to hope for success. I was realistic and knew the chance for success was about only 35 to 40 percent. When I got the news, I was very shocked and elated. It was strange to go through this 48-week grueling experience and one day get a phone call, "ding," you're all done. No more treatment, you're cured!

By "cured", I guess you mean that the virus is at "undetectable levels." What does your doctor expect from you now? Do you still have to go in for blood tests?

I'm pretty much done. I will get a hepatitis C viral test in January. My doctor tells me that the likelihood of relapsing is 1 to 2 percent at this point, so I'm not worried.

I'd like for you to comment on the social aspect of hepatitis from your experiences.

My experience is probably much different than most people. All of my friends and family are in the health care business in one form or another: physician, dentist, or nurses. So, they never treated me any differently. It was never an issue for them. The same thing at work. I never felt stigmatized or anything. I have always been very open about having this disease and pretty much everybody that I know knows that I have it. Being married for 20 years obviously meant that I didn't face the same issues that someone single might face (like dating). I would imagine that that could be very difficult. The only social ramifications were that I wasn't able to drink alcohol at social functions, which wasn't really a big deal for me, or when I was on treatment, that I skipped a lot of social functions or went home early.

Can you share with us how this entire process (diagnosis and treatment) affected your wife? It sounds like she was really supportive.

My wife is not an extroverted person. She tends to keep things inside, so sometimes it was hard to know what she was thinking. She is a nurse also and has had a lot of clinical experience treating people with Hep C. Her background made it easy for her to understand why I was feeling the way I did, and to make everything so much easier for me. She always put my needs first. I seriously doubt I would have been able to complete this treatment without her.

Advice for Someone Newly Diagnosed With Hepatitis C

Take a deep breath and realize that it's not the end of the world. You are more likely to die from old age than from Hep C.

The previous interview contains the comments and opinions of a hepatitis C patient and should not be taken as medical advice.