Tuesday, May 18, 2010

World Hepatitis Day 2010: More About How I Became HCV+ (#thisishep)

August 1988: So there I was, once again, in the Emergency Room at UCLA Medical Center, only this time I was turning yellow.

My bout with acute hepatitis progressed rather quickly from the time I noticed tinges of yellow around the corners of my eyes in San Diego. Twenty-four hours later, there in the ER, the whites of my eyes turned completely yellow and my skin was changing color too. The effect was similar to the fake orange color of a spray-on tan, only in a dark shade of yellow.

By the time I got to the ER, I was extremely nauseous, vomiting, unable to eat, extremely fatigued and experiencing pain over my rib cage on the right side. The most troubling symptom for my doctors was my high fever. I waited patiently in the ER as they evaluated me, drew blood, called for a consult and found a bed for me on the oncology floor. It comforted me to know that at least I would be cared for by the doctors and nurses I came to know during my cancer treatment.

The worst part for me about having acute hepatitis was the nausea and vomiting. I literally threw up more with acute hepatitis than I did the entire duration of my cancer treatment. It was a good thing they started an IV, because for a while I could not keep anything down. Between the fevers and antiemetic medication, I spent most of the first few days in the hospital sleeping. By the time I felt ready to attempt to eat food again, I could only tolerate a pureed diet.

While hospitalized, I experienced my first liver biopsy. Honestly, I didn't think it was half as bad as all the bone marrow biopsies I endured. The liver doctor numbed up my right side and stuck a long needle in between my ribs as I laid very still on my hospital bed. From my vantage point, I really didn't see the needle and I felt very little pain with the procedure. Afterward, I was instructed to lay flat on my back with a sand bag over my liver for several hours, time which I spent napping. The purpose of the biopsy was to assess liver damage, but I think because I was so sick the results came back atypical, showing I had chronic liver disease.

After about a week, the medical staff felt that my fevers were under control and I could be discharged. I went back to my parents' home still needing to eat a puree diet. My dad was traveling for work at the time, so I begged my mother to go to the store to pick up some baby food and popsicles. When she refused, I called a friend and he came over and took me to the store. Later that evening, I started spiking a fever again. I placed a call to my oncologist and he instructed me to go back to the ER. My mother was furious at me. During the entire ride to the hospital, she ranted about how I shouldn't have gone to the grocery store and how inconvenienced she was having to drive me to the ER. The minute the doctors decided to readmit me, she left and went back home.**

In total, I spent somewhere between two to two and a half weeks in the hospital because of acute non-A, non-B viral hepatitis.

By the time I was discharged for the second time, I was living with horribly debilitating fatigue. It took me several years to very slowly and completely recover. My plans to return to classes at UCLA to complete my Bachelor's degree in the Fall of 1988 got pushed out to Winter quarter 1989. Instead of going back to college full time, I needed to adjust my schedule and take classes part-time. It took five quarters instead of three to complete my Bachelors degree, but what matters most to me is that I received my degree in June 1990.

I spent that first Thanksgiving after the one-two punches of cancer treatment and acute hepatitis helping to prepare dinner from a seated position at the kitchen table. I bought a copy of Jane Brody's Good Food Book and I was learning how to cook a liver friendly diet full of vegetables and fruits. I remember I made her mashed potato stuffing for the turkey that year and was roundly criticized by my family for that choice!

Back in 1988 they called what I had non-A, non-B hepatitis because they hadn't yet identified the virus that causes Hepatitis C. When the Hepatitis C test came out in 1992, my doctor ordered the test for me. It was not a surprise when the results came back. I was HCV positive.

Perhaps the only good thing that came out of this ordeal was knowing that I had hepatitis. This knowledge made it clear to me that I needed to take good care of myself and I was advised by my doctor to avoid drinking alcoholic beverages. Believe me, there were times I wished I could join my friends trying the latest drink sensation--like cosmos in the 1990s. But I chose to abstain because I never want to be as sick as I was back when I had acute hepatitis. Turns out, avoiding alcohol was very good advice. Research shows that moderate to heavy drinking can increase the progression of Hepatitis C infection resulting in more severe liver damage, cirrhosis and an increased risk for liver cancer (read more here.)

I have known for 22 years that I have been living with Hepatitis C. I am one of an estimated 3.2 million Americans living with it each and every day. If it hadn't been for my severe bout of acute hepatitis, which is a very rare occurrence, I might be one of the many people who don't know they are infected. Yes, I am one of the one in twelve people worldwide living with viral hepatitis. And tomorrow on World Hepatitis Day, May 19, 2010, I am going to ask you the question, "Are you number 12 too?"

**ADDENDUM: I can look back on that episode with my mother and laugh now. In contrast, it makes all the things my dad did for me during that time, like taking me to the ER and hospital multiple times, seem almost heroic. She didn't know how to be caring, but thankfully my dad did. She passed in 1999 from colon cancer and I chose to care and be there for her. I know there is some irony there and a lesson too: we all do the best we can with the cards life deals us.
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