Personal Stories: Rudolfo’s Story
One Man’s Personal Quest for a Cure
Rodolfo is a pioneer. In his journey to find a cure for his chronic hepatitis B infection, he has chosen the path less traveled at almost every step of the way.
Today, he practices meditation and yoga to strengthen his body on a daily basis. He takes an oral antiviral drug called tenofovir (Viread), which has not yet been approved for hepatitis B treatment by the U.S. Food and Drug Administration (FDA). Recently, at age 42 years, Rodolfo participated in a highly experimental stem cell treatment available only in Europe.
Rodolfo’s non-traditional pursuit of a cure is fueled by a fierce drive to recover the health and energy he had before suffering from acute hepatitis B five years ago, when he was living in New York City. The liver infection initially devastated him physically and emotionally. “I was trying to launch a theater career and loving the high energy of New York City,” he recalled, “and then hepatitis B hit me like a ton of bricks.”
Suddenly, he was exhausted and aching all the time. A simple blood test showed that he had acute hepatitis B. Follow-up tests showed that the virus was not going away, and he was then diagnosed as having chronic hepatitis B more than six months later.
Rodolfo’s doctor wanted to perform a liver biopsy to see whether he had any liver damage and whether he would be a good candidate for treatment. “I avoided getting a liver biopsy for almost a year because I was in denial, I didn’t want to face the fact that my life would be permanently changed by this,” Rodolfo said.
Finally he relented and underwent a needle liver biopsy, which is a procedure that involves the removal of a small sample of liver tissue for examination. The biopsy revealed cirrhosis – serious scarring of the liver.
Rodolfo returned to his hometown of Miami and to the embrace of his close knit Cuban-American family as he attempted to reassemble his life. During this time, however, he refused to accept that the fatigue, pain and liver damage caused by his chronic hepatitis B infection was something he couldn’t beat.
“My symptoms are the reason why I am willing to be so experimental in pursuing treatment,” he said quietly. “And the fact that I may be advancing research that could lead to a successful hepatitis B treatment is simply so satisfying that it enriches my life,” he added.
Initially, his doctor recommended treatment with the oral antiviral drug called lamivudine (Epivir-HBV). But Rodolfo viewed it “as a palliative, a drug I would have to be on it for the rest of my life.” He wanted a treatment that had the potential to produce a cure, regenerate his liver and return the energy he had before being struck down with hepatitis B.
Although Rodolfo decided to try lamivudine, after one year of treatment his viral load rebounded due to drug resistance – that is, the virus stopped responding to the drug and started reproducing actively again. From this disappointing result, he started doing extensive research on his own and learned about tenofovir, an antiviral drug that has been FDA-approved to treat HIV, but also appears to be quite effective against hepatitis B.
While tenofovir has not yet been approved for hepatitis B, Rodolfo found a liver specialist who was willing to prescribe it “off-label” since the drug is in phase III clinical trials for hepatitis B. For the past three years his viral load has dipped to undetectable levels and his liver damage has subsided.
But Rodolfo was still in quest of a complete cure and maintained an active “hope file,” where he compiled news of experimental treatments that might some day vanquish the virus and regenerate his embattled liver.
“I have a fighter spirit in me,” he admitted with a shy smile. “I don’t just settle for what is available.” He didn’t want to assume that tenofovir would always be able to keep the hepatitis B virus in check.
He read about a doctor in England who was conducting experiments that used stem cells to regenerate the liver. According to the research literature, human embryonic stem cells have the potential to develop into many different cell types in the body. Serving as a sort of cellular repair system, they can continuously subdivide and their “offspring” cells have the potential to become another type of cell, such as liver cells that could potentially repair a liver that has been scarred or damaged by chronic hepatitis B.
Stem cell research has been limited by politics in the United States, despite early successes in Europe and Asia, because stem cells can be obtained from aborted embryos, as well as cloned or cultivated from a patient’s own white cells. “The minute I read about an experimental trial using stems cells to regenerate the liver, I decided I had to get into it,” Rodolfo said, “this could be a possible cure for chronic hepatitis B.”
He emailed the London researchers and in early 2005 was one of five people accepted into the trial. “They used my white blood cells to cultivate about one million stem cells, which they infused into my portal vein. It is hoped that the stem cells will multiply in my liver, take on the characteristics of healthy liver cells, and proceed to repair and regenerate it,” he explained.
In London, the doctors drew blood from one of his arms, removed the white blood cells, and then pumped the blood back into him through his other arm. “You feel quite weak during the process,” he said. The major risk of the treatment was a side effect from a drug used to boost the body’s ability to create stem cells from white blood cells. It could cause a rupture in the spleen if too many stem cells were produced.
Since undergoing the highly experimental stem cell treatment, Rodolfo has experienced no ill effects from the treatment. It will be several months before researchers can tell if the transplanted stem cells were successful in generating new, healthy liver tissue.
In the meantime, Rodolfo has returned home to Miami and is recovering from the procedure. He admits it is sometimes hard to be a “medical guinea pig”. “Family members told me I was out of my mind to try this, and my dad was very anxious, but it is very important to me to find an effective treatment for myself and for others who live every day with the debilitating effects of chronic hepatitis B,” he said. “There has to be a way to beat this infection. And I’m determined to find it.”
Note: Description of stem cells comes from NIH (http://stemcells.nih.gov/info/faqs.asp#whatare)