Marcy's Story 

“I found out I had Hepatitis C in 1992, by letter from the American Red Cross after a routine blood donation. It has been determined that I probably acquired the virus in 1970 when I was 19 years old and underwent major back surgery, during which I received 5 pints of donated blood.

What was it like for you when you found out?  I was scared to death; I didn’t know what Hepatitis C meant, so I took the letter to my family doctor who indicated we would track the virus via yearly blood tests to check liver enzymes. My only symptom for years (even after my first round of treatment) has been extreme tiredness.

Describe the process you went through in getting medical care, whether to seek treatment, and the results. I originally was started on the current two-drug protocol in 2000, but due to the severity of the side effects, quit after 8 weeks. I was a walking zombie - no sleep, very, very irritable, couldn’t think, etc. I changed family doctors, and in 2006, my new doctor strongly recommended undergoing treatment again, to which I agreed. The year 2007 was spent on Interferon and Ribavirin, and a host of side effects plagued me from hair loss to loss of appetite/nausea, disturbed sleep, moodiness, etc. On the positive side, about 6 months into treatment, the virus was “undetectable.” However, three weeks after finishing my treatment in December, 2007, a blood test revealed the virus was back. I was told it could not be determined whether I was a “relapser” or a “non-responder.” It was also decided by my specialist and myself, after a 9-month break, that I would begin treatment again, this time, if after 6 months on treatment the virus was deemed “undetectable,” I would then continue on treatment for another 12 months! That’s exactly where I am right now.  My last appointment with my specialist revealed the good news-bad new: Good news: no detectable virus; Bad news: another 12 months on treatment!

What aspect of your life has Hepatitis C impacted the most (relationships, family, employment, emotions, etc.), and how has it affected you. Hepatitis C has slowly invaded various aspects of my life, and it isn’t until afterwards in some situations that I am able to see what has happened. I was employed in 2007 when I began treatment, but about 4 months in, the moodiness just overtook me and I ended up, in tears, calling my boss on the telephone and telling him I couldn’t stand the drive to work anymore and I was quitting. Fortunately for me, for another 8 weeks, I was able to work from home, until the company drastically downsized.

My husband, God bless him, is the best person to have by my side as I go through this second round of treatment. He married me in 1994, knowing full well at that time that I had Hepatitis C. He understands that mornings are just not good times for me, that I “bloom” mentally and physically from about 10:00 a.m. to 4:00 p.m., and that about 9:00 p.m. at night, I’m ready for bed, and don’t bother me until 8:00 a.m. the next morning! He tries to ply me with my favorite or forbidden foods when he knows that my stomach is not doing well or when I just don’t feel good. My friends have been especially supportive and my extended family now realizes just how serious this disease is.

Lately, my emotions are running amok! I feel like it’s always Christmas, when they show the “sappy” commercial and TV specials - I can be watching TV or listening to my iPod, and all of a sudden, I’m crying buckets.

Physically, this time around, most of the side effects have been: my hair has been growing 1/4-1/2 inch per month; although I have some nausea, I haven’t lost any weight this time around - instead have gained some; have had very, very itchy skin relieved by over-the-counter applications, and very tired/short of breath - after exercising in my gym’s pool (1/4 mile water walk and 35-40 minutes of water aerobics), I feel as if I’ve run 2 or 3 marathons!!!!!

What works for you in living successfully with hepatitis C?  I am not currently working (although I would like to be), and once home from the gym or any medical appointments, I kind of just “be” and let my life go on. I’ll read or watch TV or play with my dogs. I have noticed this time around that the brain fog seems to be increasing - I have always prided myself on my mental acquity; several times in the last couple of weeks, I’ve been caught short!!! Lastly, next to my husband and my spiritual support system, I am fortunate to have the family physician that I do. He works with my specialist and me in getting me the best support he can.”

Personal story provided by Marcy, Cleveland, OH