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In his own words: living with hepatitis C
As told to Michelle Badash, MS
Mike is 41-years-old and formerly a Television Mass Control Operator. Due to the severe side effects of his hepatitis C treatment, Mike lost his job one month ago. He lives by himself in Florida and has family in Virginia.
What was your first sign that something was wrong? What symptoms did you experience?
As I look back, I realize that I had been having symptoms for years that I never identified. Early symptoms included fatigue, "brain fog", aches and pains—I probably thought I had a touch of the flu. My first clue that there was a problem came in 1997, when I donated plasma. The count came back abnormal, and they recommended that I have my blood checked.
What was the diagnosis experience like?
After donating plasma, I did see my primary doctor, who referred me to a hepatologist. The hepatologist diagnosed me with Hepatitis C, genotype 3A. I was told that this genotype is more commonly found in Europe and Asia than the U.S. In the U.S., people are more likely to get genotype 1A. Supposedly, genotype 3A should have been easier to treat, but that has not been my experience. In addition, they classified my liver damage as being Stage 3 (the stage prior to cirrhosis.)
At the time I was diagnosed, there were few treatments available other than interferon. So my hepatologist decided to wait one year before beginning any treatment. He wanted to see how my condition progressed, and also thought that other treatments might become available during that time.
What was your initial and then longer-term reaction to the diagnosis?
At first, I was shocked and disbelieving. I couldn't understand it. Of course, it was hard. But I'm a pretty strong person. Over time, I have come to accept it. Now I just concentrate on learning as much as I can, and dealing with the symptoms. I've gotten used to it, and it doesn't affect me as much now. But other people are often overwhelmed when they hear about my illness for the first time. I have to remember that sometimes.
How do you manage your condition?
I've been through some very difficult treatments.
After the initial first year with no treatment, the heptologist put me on a combination treatment of Interferon and Ribavarin. The interferon was given by self-injection 3 times a week, and I took the Ribavarin pill 5 days a week. Each of these treatments produced symptoms that were quite similar to Hepatitis C symptoms: memory loss, sweating, chills, double vision, ringing in the ears. The symptoms were very intense—it was like having a double-dose of the disease! During this treatment, I began having increased problems at work. In addition to having difficulty performing my job due to the side effects, I needed special accommodations (such as a cot to lie down, a small refrigerator to store my medication). My employers at the TV station were unwilling to provide any of this, since they were afraid that others would also request special amenities. This created a great deal of stress, and I think worsened the symptoms.
After six months of the combination treatment, the doctor took me off it because my body was unresponsive to the treatment. I had no treatment for the next 6 months. During this time, the side effects diminished, of course, but I still had symptoms from the disease.
The next treatment was called Infergen, which I took for 48 weeks. Initially, I got injections 5 times a week, but this was tapered down to 3 times a week. The side effects were "twenty times" as bad as the combination therapy—I even had hallucinations. (Needless to say, you are not allowed to drive or operate machinery during this type of treatment.) But the treatment worked: my viral load decreased from its initial count of over 1 million to 100,000 on the combo therapy, then finally to zero on Infergen. After Infergen treatment, the virus was no longer detectable in my blood. Unfortunately, this did not last long; after 6 weeks, my bloodwork again showed signs of Hepatitis C.
The last treatment that I tried was a combination of peg -interferon: the "peg" is an extra molecule in the interferon treatment that enables it to stay longer in your blood. However, they also wanted me to take 7 pills of Ribavarin with this new interferon treatment, which I found intolerable. I felt I was bouncing off the walls. The first day of treatment, I was fired from my job.
Now, I have discontinued drug treatment, and am focusing solely on herbs to help my liver enzymes. I have found the following to be extremely helpful: green tea, milk thistle, dandelion, root extract, and lecithin. I am much happier with this herbal treatment, as there are no side effects, and the herbs are easy to obtain. [It is important to talk with your doctor before discontinuing any drug treatment or beginning any new therapies, including alternative therapies.]
Did you have to make any lifestyle or dietary changes in response to your illness?
I've done a lot of research to learn what foods might be helpful. I'm pretty careful about implementing what I read—I make sure that there's consensus in at least 12 different sources before I decide to eat certain foods, or take an herbal remedy.
I've increased foods in my diet that I've found to be beneficial to the liver(such as brussel sprouts and broccoli. I also learned that both shiitake and Reisha mushrooms contain a natural form of interferon, so I've been eating those as well.
In terms of lifestyle, I try my best to avoid stress as much as possible, and get as much rest as I can.
Did you seek any type of emotional support?
I did go to counseling, but it was mostly related to coping with my problems at work. Unfortunately, insurance would only cover three sessions, so I only went for a total of 4 - 5 sessions before I had to stop.
Did/does your condition have any impact on your family?
Well, of course they are aware of my condition, and they have concerns, but there is not the day-to-day impact, since they are living in Virginia.
What advice would you give to anyone living with this condition?
I would advise you to avoid stress as much as possible, get lots of rest, and exercise if you can. Also, look for morale-builders to make yourself happy, and surround yourself with people who love and care for you.
I would also suggest that if you are working when diagnosed, that you retain legal counsel. You may need a lawyer to negotiate with your employer. Although I wanted to continue working—and still do—ultimately, I was forced out of work. My only option now is disability.
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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