Hepatitis counterpoint: Carrier says treatment not worth side effects

Diane DeSilva started her nursing career in 1974 and believes she was infected with hepatitis C in the 1980s, years before a test was developed in 1991 to identify the virus that attacked her liver. She was an operating room nurse and remembers delivering babies barehanded if the doctor didn’t make it in time.

She is also a nail biter, providing entree for a blood-borne disease.

She went through the aggressive treatment and her conclusion is: Don’t. Live with hepatitis C and live a healthy holistic lifestyle. Just don’t infect anybody else. She contends the treatment’s brutal side effects and the low cure rate aren’t worth it.

Diane’s view is the exact opposite of Bonnie Brunson’s, whom I wrote about Saturday. Bonnie admitted it was tough, but thought the harsh treatment was worth it.

One difference: The treatment worked for Bonnie and didn’t for Diane. Bonnie’s voice is strong and vigorous at 65. Diane, 57, sounds tired. Another difference: Bonnie appears to have been diagnosed early; Diane was not. Early detection is a key to successful treatment.

“Make an informed choice,” Diane said. “There’s a 20 percent chance of cure and a lot of dangerous side effects.”

Diane is writing an article on hepatitis C but hasn’t found a publisher yet for the 8,800 word piece titled “Consider Yourself Warned: Hepatitis C is Here in Epidemic Proportions.”

She shared the work in progress with me in the aftermath of news that 40,000 people, and maybe more, need to be tested for hepatitis B and C and HIV because syringes were being used twice and contaminating vials of anesthesia at the Endoscopy Center of Southern Nevada. Other Nevada centers also are now being investigated.

Diane said there are some incredible laws on the books involving hepatitis. The Nevada Board of Cosmetology said beauticians can’t color hair or cut hair of people with hepatitis. Diane learned that the hard way as she was in the chair, chatting away about her illness.

Manicures and pedicures are supposed to be out of bounds for those with hepatitis because of the risk of transferring blood from one customer to another. Experts believe hepatitis C can live outside the body for up to three to four weeks in dried blood, Diane writes.

During her treatment, people always ask her how she got hepatitis. “I have always felt that it was a rude and thoughtless question. Do you ask someone how he or she got cancer or even HIV/AIDS today? I felt unsupported, vulnerable, robbed of my identity and judged.”

I read this shortly after I had asked that exact question.

Diane noticed symptoms in 1996, probably 15 years after contacting the virus. Fatigue, weakness, nausea, loss of appetite. “I thought I had the flu or that I was working too much, not getting enough sleep and had stress in general,” she wrote.

Her first 48-week treatment started in September 1998. “I was suffering terribly each day with fatigue, fevers, muscle aches, insomnia, loss of appetite, nausea, vomiting, stomach cramps and diarrhea.” Her initial test three months after the treatment began detected no virus.

Good news for Diane, but other side effects continued. Depression. Hair loss. “Finally the 48 weeks had passed, I looked like a concentration camp victim.” She had lost 50 pounds.

She would be considered “cured” if the virus didn’t return in nine months. One month later, her lab work detected the virus.

After three months without treatment, she felt better. But after a few years, the symptoms returned. A new treatment was offered to the married mother of two in 2003. Again, good results after three months, then the horrible side effects.

In May 2004, she was hospitalized with a thyroid crisis. After 36 weeks of the second treatment, she stopped, tossing the expensive medications.

Diane turned to alternative medicine in 2005 after losing faith in conventional medicine. In January 2007, she started having grand mal seizures. “I am still alive and better off than some.”

But Diane DeSilva wouldn’t undergo the treatment if she had it to do over again. Bonnie Brunson would do it in a heartbeat.

Jane Ann Morrison’s column appears Monday, Thursday and Saturday. E-mail her at Jane@reviewjournal.com or call (702) 383-0275.