I am a 37-year-old, single, gay, white male living in Washington, DC. In November of 2005 I woke one morning to discover a hint of yellow in my eyes. I went to my doctor a couple of days later, by which time my skin had started turning yellow. My doctor took blood samples for testing and they came back positive for Hepatitis B. Over the next few weeks I got sicker and sicker...and turned a horrible shade of yellow. I have never felt so sick in my life. The rest of 2005 was spent at home, sleeping much of the day.
In addition to rest, I made some radical changes to my diet to help with digestion and ease the strain on my liver. Of course the first thing to go was the alcohol. In consultation with a nutritionist friend of mine, and my doctor of course, I gave up eating all meats and eventually gave up dairy. I ate a lot of vegetables, soups, whole grains/pasta, brown rice, oatmeal, tofu, soy, etc. I stopped drinking anything with caffeine and limited my sugar intake, including not overdoing it on too much fruit initially. Even though I gave up a lot, I was eating more frequently and was careful to make sure I was eating a balanced diet. I had never eaten so healthy in my life. Eventually I ended up losing 60 pounds just from changing my diet. But I never felt like I was starving or that I had deprived myself...it was just a new outlook on nutrition. For years I have tried many different diets, but none was nearly effective as this. In addition to the dietary changes, I also started taking acidophilus, plant enzymes, milk thistle, and vitamin C with each meal.
When I was first diagnosed on November 21, 2005, my bilirubin (total) was 12.0, my AST was 768, and my ALT was 1756. My bilirubin level eventually hit 19.2 and then all my levels started going down by the end of December. In February my bilirubin dropped to .8 and my AST was 101 and ALT 231. By the time June 2006 came around, my AST was 152, my ALT was 311...and my viral load was a staggering 830,000,000...yes, 830 million! Well, I was considered to be chronic and my doctor started me on a combination of Epivir HBV and Hepsera. By the time of my next tests in August 2006, my AST had dropped to 29, ALT dropped to 70, and my viral load went way down to 6,800.
All this time, I continued my diligence with nutrition and my diet. By this time I was eating vegan a majority of the time, but not exclusively. I was maintaining my weight loss...and started introducing seafood in my diet. The Epivir HBV and Hepsera were still part of my daily routine. My next tests were in November 2006, when my AST was 18, ALT 16 and viral load had dropped below 100. Also at this time, the tests came back negative for the E-antigen, but I was still also negative for any antibodies.
Then came something nothing short of miraculous. Just recently, in February 2007, my test results came back positive for the antibodies...the virus had been eradicated...I was cured! My doctor went on to explain that they look for the antibody level to be above 10...and mine was 884! My AST and ALT levels were normal. As you can imagine, I was thrilled, my doctor was thrilled. Everything I have read confirmed what my doctor told me...this does not happen very often! One-and-a-half years after being diagnosed, and 7 months after starting the Epivir HBV and Hepsera, I was cured. I had been prepared for a lifetime of taking these drugs and closely monitoring the hepatitis to try and prevent any liver damage. But now those two pill bottles just sit in my cupboard as a reminder to me.
I am convinced that my diligence with nutrition and diet went a long way to give my liver and my body as much help as possible in fighting this. That, combined with the drugs, and some help from God, have provided me with a miracle. I have maintained the weight loss the entire time (and am trying to lose just a few more pounds to reach a personal goal). As my doctor said, I have eliminated a number of risk factors from my life, such as heart disease, diabetes, etc. I am healthier now than before I was diagnosed with hepatitis B. I have had some alcohol to toast this momentous occasion...and I have a very low tolerance for it now, having abstained for so long!
Throughout the last year-and-a-half, I have read many different stories from others dealing with hepatitis B. I wanted to share my story...in hopes that others might find it as helpful and inspiring as I have found those that I have read.
I have been a single parent of a wonderful son for 13 years. I always dreamed of adopting a daughter and began the process of adoption a year ago. Because I was requesting an “older child” of five or six, I was enrolled in a special program through my agency for children who may be considered “unadoptable. I conducted an exhaustive research into the issue of adopting “older” children including attachment disorders and the potential for learning issues.
I received a referral of a four year old beautiful little red head who looked right at ME from the photograph. I fell immediately in love. Then came “the news.” She was in the special program because she was diagnosed with chronic hepatitis B. I asked my agency caseworker what – exactly – was hepatitis B? She was unable to give much clarity to the situation, so I began another exhaustive research into this disease with which I was only very vaguely familiar.
An Internet search led me to many websites and stories that, quite frankly, scared me and dissuaded me from considering becoming this child’s Mommy. But, then, I found the Hepatitis B Foundation. I wrote a frantic e-mail with questions and concerns, which was answered in less than 24 hours with a phone call from the HBF staff. In soothing tones backed by facts and statistics, I was led through the ins-and-outs of hepatitis B.
Bottom line: I proceeded with the adoption based on the knowledge that the Hepatitis B Foundation armed me with and I THANK YOU! My daughter is strong, healthy, loving, and a true blessing to my son and me. She has been evaluated by the pediatrician and is scheduled for her first pediatric hepatologist (liver specialist) appointment. Based on the foundation’s advice, I had my son’s blood tested to make sure his hepatitis B vaccine worked, and I also received the vaccination series myself. In fact, my three sisters also received the vaccinations!
Am I scared? Yes. But I now know what exactly to be scared of and am confident that I can handle it. (That is, except for the stuff in the coming years inherent in raising a teenage girl!)
Potential adoptive parents hear it over and over, “Adoption is a leap of faith.” Children may enter our families with various challenges, learning issues, attachment concerns. So adoptive parents sometimes have to just close their eyes, open their hearts, and leap.
I took that leap and adopted a PERFECT little girl who just happens to have chronic hepatitis B. And I wouldn’t trade her for anything!!
To the Hepatitis B Foundation, please accept my sincerest gratitude for the resources you shared, the guidance you gave, and for helping me to accept the referral of my beautiful and loved daughter!
A Grateful Mom
In the spring of 1984, I noticed that a beer I was drinking tasted strange. About the same time I began to feel like something was pressing against my stomach. Gradually, I began to lose my appetite and thought, “Uh-oh, I'm coming down with the stomach flu.” This went on for several weeks.
My job then was in a Texas institution for the mentally retarded where I worked as a nurse. My work routines began to seem burdensome and small things irritated me. Each night when I got home I was just beat.
In June of that year, when I had just turned 54, I scheduled a minor surgical procedure for a Friday, figuring that I’d be completely recovered and ready to go back to work on Monday. When Monday came and I hadn’t recovered, I knew something was really wrong because I was a healthy person and used to bouncing back quickly. I went to see my doctor who thought I might have an ulcer. He asked for a urine specimen and I noticed how brown it looked. The next morning, my doctor called and gave me the news: I had tested positive for hepatitis B.
During report time at work, I told my head nurse and fellow nurses. The atmosphere in that room changed instantly. The nurses visibly shrank from me as though I were a leper and my head nurse, looking grave, said that I’d probably be off work for a long time. It was surprising how little we knew about the disease.
My head nurse was right. It was fall before I was able to even consider going back to work. Despite the initial diagnosis of a “mild” hepatitis B case, I was literally unconscious for a good part of
many days. One day when we were in the grocery store, all my energy suddenly vanished, as though a plug had been pulled and it had all drained out. And so it went, week after week after week. I felt I was fighting some unseen enemy that was bent on my destruction. The uncertainty of never knowing when it would strike sapped my confidence horribly. It was like living at the end of a leash of indeterminate length so that I never knew when I’d reach the end and be unmercifully jerked back again.
Over time, through repeated bad experiences, I learned to store up energy by staying in bed a certain length of time before doing anything, and then to rest up afterwards. Normally, a person gets that “second wind” when the liver releases stored glucose into the bloodstream. That’s what gives us stamina. With a damaged liver we don’t have that reserve. When it’s gone, it’s gone.
The onset of hepatitis B, according to my medical dictionary, is described as “insidious” meaning “coming on gradually or almost imperceptibly”. That definition could describe my recovery as well. It was two steps forward and one step back for about two years. In October I returned to work. At first, I only worked a few hours at a time, just long enough to administer all the evening medications. Over the next six weeks or so, I gradually increased the amount of time I spent at work. However, it finally became apparent to me that I just wasn’t up to the job any longer and I resigned at the end of November.
In December, my longtime partner Nick and I went to Mexico. We had no reservations, spoke almost no Spanish and sometimes walked long distances carrying our luggage. Despite these hardships, I will never forget this trip, for many reasons, both good and bad.Shortly after the trip, my son’s mother-in-law, who owned the house I was renting, passed away. Instead of leaving her property to
her daughter, she put it in a trust fund managed by the bank. The bank then raised my rent 75%, which forced me to move out. Moving, under the best of circumstances, is something I both
dread and abhor. It would have been difficult enough, given my health problems, even if we had just rented another house in town. Instead, Nick and I bought a piece of completely undeveloped
property 100 miles away. It had no utilities, no buildings, and was far out in the country on a badly rutted road. Only people as naïve as Nick and I would have undertaken such a venture, but that’s just
what we did.
To this day I do not understand how I found the strength to get through the months that followed buying this property. We first bought a trailer (the only house I ever owned) and had it moved out to the property. Living in a trailer was certainly a brand new experience for me. I spent many an anxious hour through storms willing it not to turn over and crush us to death. When I say storms, I
mean the most spectacular displays of lightning I’ve ever seen and rains so torrential they literally prearranged the landscape. Despite it all - with many days when I felt so crappy - I loved it there.
By late winter of 1986, all of the romantic walks through fields of waist-high wildflowers, nights of star-gazing and the surreal feeling of living in a western movie were not enough to disguise how
desperate our situation was beginning to be. The money was running out and Nick was spending more and more time with some less-than savory neighbors.
When my daughter Valerie and her husband Dwight came to visit us in February, she was frankly worried about my condition but didn’t say so. That spring I crashed. My depression became so acute that in desperation I called the suicide hotline in Austin. This turned out to be one of the best decisions I ever made. I was directed to a place where I was evaluated. Though I cannot now
remember who recommended a liver biopsy or why, I had one done.The diagnosis was “some inflammation” that seemed to be healing.
I was told that I had “chronic persistent” hepatitis B, and from what the doctor said, I was given to believe that the condition could gradually resolve over time. There was no treatment
prescribed. I continued to take the vitamin and mineral supplements that I had taken for years, plus herbs that were supposed to be especially beneficial for liver health: dandelion root, tumeric and
Later that month I visited Valerie and Dwight in New York City. While there, we got word that my mother had died and that she had divided all the money evenly between my sister and me. I was frankly surprised that my mother left me anything, but it was a lifesaver. From then on my life began to change dramatically.
That summer I saw a notice in the paper about a course in Silva (self) Mind Control that intrigued me. It opened doors for me in bringing my awareness to my unconscious negative thinking and programming and taught me how to meditate. With this newfound power, I decided to embark on yet another career. My nursing days were gone and I was open to something new that better suited my belief in holistic health and medicine.
I moved back to Austin and enrolled in a one-year program for massage therapy. This course exposed me to principles of Chinese medicine and to various forms of energy
work. It also put me in a community of people who were there for me when my life with Nick began painfully falling apart.
From the time I started massage school, I was also getting massage therapy work done myself. It had the effect of letting me out of a cage that had imprisoned me my entire life. My self-confidence
soared. I became increasingly interested in eastern religion and metaphysics.
During this time my family considered a move to the West Coast to open a bed and breakfast inn. When Valerie and Dwight bought a house in the Columbia River Gorge of Oregon, I planned to join
them on the venture, knowing that I could contribute my skills of cooking, gardening and massage. It seemed like a dream come true: being able to work and live with my family.
In June 1989, at age 59, I moved to Oregon to manage the house until my family’s arrival. I did not know one soul in Oregon, but the scenery was magnificent. That first summer, I began landscaping the
property, painting deck furniture and doing more things to fix up my new home than I can list.
The following year, Valerie became pregnant after 12 years of marriage. The announcement shocked me to my knees. The dream I was living had come to an end before it began -- my family never
did move to Oregon after all.
In June of 1992, Valerie and I took a trip to Washington State while Dwight took care of their toddler at the Oregon house. While we were on that trip, some old familiar symptoms began to reappear
and I feared the worst; the hepatitis was coming back.
By late summer my liver enzymes were the highest they’d ever been and I was diagnosed with “chronic-active” hepatitis B. By then I was definitely sick. My date book for that time tells a dramatic
story. There were lunch and dinner dates, house guests, massages, After that there was nothing but blank pages. I sat in my chair. That’s all I did. My doctor at the time was a naturopath and an acupuncturist. He told me, “You don’t have to die from this.” This was valuable to hear because my medical books painted a fairly grim picture for chronic active hepatitis.
Dr. S. told me that it was very important that I rest, rest, and rest some more. He put me on a very digestible diet and I had acupuncture treatments to balance my liver meridian. When he learned that the root of a native plant had antiviral properties, he told me to take that, too.
In October, I arranged to see a gastroenterologist from Portland. He examined me and noted petechia on my upper back and redness of my palms, which he said were signs of some liver damage. Neither he nor any doctor I had seen thought I had cirrhosis. We discussed all the medical options available at the time, including interferon treatment. I decided none of them sounded right for me. For one thing, they were all very expensive, required frequent trips to the doctor, and could cause a worsening of hepatitis once the treatment had ended. He didn’t discourage me from what I wanted to do: continue with my good diet and supplements and manage my energy as carefully as I could.
This last bout changed my body. I gained at least fifteen pounds and I could function only half of each day. Up until then I had looked and felt 15 or 20 years younger than I was. Now it was no longer true. I just never regained the kind of stamina for regular exercise classes, though I did (and still do) yoga at home.
One thing I love to do is writing. There was a period when I wrote daily and extensively in one journal after another. And I’ve always been an extensive letter writer. Now, sitting weakly in my
chair, writing became my therapy and my salvation. I wrote essays. I wrote poetry, including Haiku. I wrote stories and recorded my dreams.
I also practiced mindfulness, noting what feeling I had when they came up, and paying attention to what made me tired and when was the best time for me to do things.
Since I had more energy in the morning, that’s when I’d do every active thing possible. I cooked practically all my food in advance, knowing that if I didn’t, I would be living on sandwiches and candy bars, and not get the vegetables and grains and good things that I needed. I learned to break big jobs into a lot of small ones and not let things build up.
I’ve truly learned how much more enjoyable life is when you focus your attention fully one thing at a time. I’ve learned to space out whatever I have to do. If I’m very active one day, I might do more sedentary things the next. This takes planning ahead but it really helps me live on an even keel. So even with hepatitis, I’m
probably better off as a whole than I was before.
In the fall of 1989, with the Oregon house sold, I moved to Connecticut where I now live in my own apartment attached to Valerie and Dwight’s house. I have constructed a rather extensive garden here and I have an enjoyable life. My last blood test showed my liver enzymes at normal range. I still take a nap most afternoons, but not always. This year, when I turned 75, I was finally able to give
While I wouldn’t wish hepatitis on anyone, I probably have the resources and temperament to handle it better than many could. It’s natural to ponder what I might have been if I hadn’t gotten the disease, but my philosophical approach is to look at what it has given me, not what it has taken away. I’ve learned to enjoy what I have rather than pining for what I don’t have.
Life since hepatitis may be less wide but it is certainly a lot deeper. Getting hepatitis was not completely the end of my life, as I knew it, but the beginning of a new life -- one with different challenges, yes, but also with some special rewards. Who knows what the future holds? No life comes with a guarantee, does it?
There was a time when Arline Loh of Wilmington, Del., didn't tell people she has hepatitis B.
"It carries such a stigma," says Loh, 57, an information technology expert who retired three months ago because of liver damage caused by the disease. "Hepatitis B is classified as an STD (sexually transmitted disease)."
It can be transmitted sexually, but Loh contracted the disease at birth from her mother, who carried the virus. About 90% of babies who are infected at birth develop chronic infection, compared with 6% of those infected later in life.
Until recent years, there was little the medical profession could do to help. Loh says the doctor who diagnosed her 17 years ago told her to "rest, and maybe you'll get better."
That has changed. Today there are five medications for hepatitis B, including two approved in 2005. "Now, I don't want to be silent," Loh says. "Now there are drugs available to manage and treat this disease."
Like hepatitis C, hepatitis B can cause long-term, chronic infection that can lead to severe liver damage, cirrhosis or liver cancer. The diseases can go undetected for decades because they often cause no symptoms until serious liver damage has occurred. "We're seeing an epidemic of both advanced cirrhosis and liver cancer," says Fred Poordad, chief of hepatology in the Center for Liver Disease and Transplantation at Cedars-Sinai Medical Center, Los Angeles. "I expect this to only get worse over the next 10 years" as the baby boomer population ages.
Hepatitis B disproportionately affects Asians and Pacific Islanders, who account for over half of the more than 1.3 million carriers of the virus, says hepatitis researcher Samuel So, director of the Asian Liver Center at Stanford University School of Medicine. Hepatitis rates among Asian-Americans are higher because the rates are high in many of their countries of origin, according to the Asian Liver Center.
China, where Loh was born, bears the world's highest rate of hepatitis B, he says. About one in 10 are infected, and about half a million people there die each year. "We call it the silent killer," So says. "Many people who are infected don't know it because they feel perfectly healthy."
Studies show that 10% to 20% of Asian-Americans have chronic hepatitis B infection. And carriers with no symptoms can unwittingly pass it on to their sexual partners or to their children. Routine blood tests don't include the specific test to detect hepatitis B, he says, so patients should ask for it.
Hepatitis is caused by viruses that attack the liver, causing inflammation. There are several types of the virus, labeled alphabetically A through E. But all of them initially can cause temporary symptoms such as fatigue, appetite loss, nausea and abdominal discomfort, dark urine and jaundice, or a yellowing of the skin and eyes.
There are vaccines for types A and B. An advisory committee of the Centers for Disease Control and Prevention last fall strengthened its recommendations to increase use of both vaccines. Now, all babies, not only those in states with high hepatitis rates, will be immunized against hepatitis A at 12 months to 23 months old. Also, hepatitis B vaccine will be required for all newborns and adolescents who missed their baby shots. Hepatitis B vaccine also is recommended for adults, especially those in high-risk groups.
Vaccination has helped reduce rates of hepatitis A from 143,000 cases in 2000 to 61,000 in 2003, and of hepatitis B from an average of 260,000 new cases a year in the 1980s, when the vaccine was licensed, to about 73,000 in 2003, the CDC says.
But the most common type of hepatitis is C, and for that there is no vaccine. As many as 4 million Americans and 170 million people worldwide may be infected, Poordad says. "There are still 30,000 to 40,000 new cases a year. Much of it stems from recreational drug use as well as immigrants to the U.S. who come already infected." He says hepatitis C is the most common cause of end-stage liver disease requiring transplantation.
Yet here, too, there is hope, he says. "There's been a flurry of research activity" investigating promising new drugs and drug cocktails, he says, and "we've gone from treatments that are less than 10% effective to therapies now that are 50% effective." Some strains of the virus can be eliminated in patients. "We feel if we can eradicate the virus," Poordad says, "we call that a cure."
That's what's happened for Robert Hartmann, 42, of Los Angeles, who owns the Improv Comedy Club chain. He contracted the disease after having dental work in 1977. It was undetected until 1992. "They didn't have a lot of treatment options," he says, so he didn't begin drug therapy for another 10 years. Now, after 16 months of combination drug therapy, he has been virus-free for a year and a half.
"That's why the message needs to get out that, guess what — get tested for hep C because the cure rate goes up every year," he says. "The sooner you get tested, the better chance you have of beating this without damage to your liver."
*Since this story was written, Arline Loh lost her battle with liver cancer, on October 15, 2013. Arline was a passionate hepatitis B advocate who was also a founding member of the Hepatitis B Foundation's One Hundred Chinese Families and Friends campaign, and was recognized as a "Champion of Change" by the White House.
My life completely changed on November 16 1997. I still remember that Sunday morning. I was going to have my breakfast when, suddenly, I fainted. Two weeks later, I had a rash over my whole body and my eyes and skin were yellow. I went to a doctor who ordered an ultrasound and blood tests. He recommended that I stay one week at the hospital.
My diagnosis: hepatitis A with a co-infection of hepatitis B. At the time I did not understand what my doctor said, but I remember him saying “You will recover from hepatitis A, but what concerns me is your hepatitis B because it does not have a cure. Many people die from liver cancer and cirrhosis as a consequence of hepatitis B.”
I was only 21 years old and can express in three words my feelings - I was shocked! I was also very frustrated because for the second time in 18 months, I had to interrupt my university studies in Chemical Engineering. Several doctors stopped by my hospital room to ask me questions about my personal life. They asked if I was a drug-addict and how many sex partners I had. The truth is, I was not a drug addict and I had never had sex. It is very important to mention this because it is wrongly assumed that you can only get hepatitis B through drugs and unprotected sex.
I spent many years crying, complaining, blaming and playing the role of victim, until I realized that there are just two solutions for situations like this: you sit and cry or, you enjoy the beauty of being alive and make every day count. I decided on the second choice.
In Guatemala it is not possible to get the HBV DNA and other important blood tests for this chronic disease. Fortunately, I have been very lucky. I have the best parents, family and friends who helped me travel to other countries to monitor my situation.
Last year I needed to get a liver biopsy and I promised that if the results were negative for cirrhosis, I would live to make two of my dreams come true: to study a specialization in hepatitis B and to create a foundation in my country. The day I can help to make sure that my country can provide free hepatitis B screenings, vaccines, and affordable treatments, I will feel that I did not pass through a couple of inconveniences in my life for nothing.
After receiving good news about my biopsy results, I happened to read the foundation’s B-Informed newsletter and was suddenly inspired to send an email to Dr. Block telling him about my dreams. Honestly, I never imagined that he was going to answer my email! I still remember how happy I felt when he answered my email almost immediately.
My dreams are coming true with the support and motivation of Dr. Block and his wife Joan, co-founders of the Hepatitis B Foundation. For years this foundation has been not only a source of information about hepatitis B, but a place and group of people who really care about those living with chronic hepatitis B. This makes me feel that I am not alone. Thank you!
Finally, I am healthy enough to continue my normal life. I have been working as a science teacher for five years and just completed my Bachelor’s degree this past November. I think that now is the moment to start my voyage to the world of hepatitis B research.
How could it possibly happen? Every precaution and care was taken. Matt, our only child with hepatitis B, had been monitored since he was two and a half months old. Three generations in our family had been tested and vaccinated for the virus. Then, suddenly and without warning, our middle son Andrew was diagnosed with hepatitis B related liver cancer. How? How? How?
We had felt so lucky. Matt, born in Korea, joined our family in 1984. Soon after he came home, he was diagnosed as a hepatitis B carrier. At that time hepatitis B was a fairly new phenomenon on the American pediatric scene and there were many unknowns. By the time Matt started school, we had found the Hepatitis B Foundation and the Liver Cancer Prevention Center at Fox Chase Cancer Center.where he was given a physical exam, and blood was drawn to monitor for liver involvement.
In 1985 our family grew again. Andrew, 7, and his sister Jenny, 6, arrived from Korea, and the same pediatrician tested for hepatitis B. We were happy to hear their tests were negative, and both Andrew and Jenny were vaccinated. We thought nothing more of it.
A son-in-law and two grandchildren joined our family and were all vaccinated. Matthew turned 20, still showing no hepatitis B side effects. All was well. We were so lucky.
Fall of 2002
Then on Sept. 2, 2002, Andrew, woke complaining of abdominal pain. By then I had six children and had been a mother for over 30 years. Stomachaches were routine. I suggested he get dressed and go to work; maybe he would feel better. But by the time breakfast was over, Andrew was in such pain that his sister took him to the emergency room and by the afternoon he was admitted to the hospital. I was stunned when two doctors came to tell us Andrew tested positive for hepatitis B.
A biopsy confirmed a diagnosis of stage IV hepatocellular carcinoma [liver cancer] metastasized to the lungs. An earlier diagnosis could have meant surgery or a transplant, but now chemotherapy was our only option, and even then it only shrank the tumor in a small percentage of patients. Our best chance was a clinical trial and a miracle.
Neither was to be. By the time Andrew qualified for a trial, his liver function was so low he was rejected. Andrew Lee Wise died at home on Dec. 11, 2002. He was only 24 years old.
But that is not the end of our story.
After Andrew's cancer diagnosis, I called our former pediatric group to see the results of all the original hepatitis B tests. Their office said the lab's records before 1992 were no longer available. One doctor gave me a handwritten copy of their file reports and said, "See! Their tests were negative. Matthew's was positive."
I read it for myself: "Hep B Surface Antibody Negative." Just surface antibody negative means nothing! It is the combination of results from the surface antibody, core antibody, and surface antigen tests that determines a person's hepatitis B status. I felt and still feel like screaming. How could a leading pediatric group in a university town get it right in 1984 and so wrong in 1985 and 2002?
One Year Later
Our family has been devastated by Andrew's death. We are weary and wary, and painfully aware his life could have been prolonged, and might have been saved had his pediatricians recognized he was a hepatitis B carrier. The lessons we learned were painful and need to be passed on, but the experience is rare.
What advice do we have? Older adoptees and their families should re-test for the virus. Be sure you see and understand the tests and results [and ask for copies]. Vaccinate the entire family. Stay informed about the latest research on hepatitis B. And enjoy life.
When our youngest daughter Mary was in high school, our youth minister asked, "What was the best gift you ever got?" Mary replied, "Andrew, Jenny and Matthew." We are still very lucky parents.
Excerpted with permission from "One Family's Story: Coping with Hepatitis B" by Helen Wise in
Hi Families Magazine (Jan/Feb 2004), published by Holt International Children's Service at www.holtintl.org.
Editor's Note: The Hepatitis B Foundation thanks the Wise family for graciously sharing their story so that other families can learn from their personal tragedy: it is important that adoptive parents are absolutely certain of their child's hepatitis B status. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. For further assistance, please feel free to email the Hepatitis B Foundation at email@example.com or call 215-489-4900.
A Profile in Courage: Andrew Lee Wise
Andrew Lee Wise
Lee, Seung-hoon was born March 4, 1978 in Seoul, Korea. Andrew, as he is now known, and his sister Jenny joined the Wise family in Princeton, N.J., in December 1985. These excerpts from his journals, conversations, and e-mails chronicle his struggle with the news in late 2002 that he had liver cancer. Andrew Lee Wise died Dec. 11, 2002, at the age of 24.
Sept. 22, 2002-I wanted to send this letter, personally, to let each and every one of you know [my] biopsy confirmed liver cancer. If you are bewildered, shocked, upset, concerned, scared, anything at all, let me assure you that I am too. However, I have come to realize that this is just a battle and a battle that I can win and will win with God, my family and my friends.
Oct. 6-I have good news: I was accepted to the Cancer Institute of New Jersey (RWJUH) for treatment
Oct. 25-I went into RWJUH October 7, two days earlier than expected [for] chemoembolization of the
right lobe of my liver. I was pretty drugged up and cannot remember anything. Once I got home.extreme amount of pain.really tough.a high temperature.
Nov. 14-I hope that everyone is able to enjoy the few beautiful autumn days that have come around
recently. However, a bit of bad news-the three spots originally seen in the scans on my lungs-they have grown since the first treatment.
Nov. 2-This treatment [chemoembolization of the left liver lobe] was a bit rougher and there were a few more complications but I am "done" (supposedly) until after Thanksgiving. I am quite concerned about what the next treatment will be. I have been told not to think about these things and focus on the here and now, but it is really hard to do. My typical day has two lows: the morning, when I first wake up and my body feels as if it has been through a thorough beating. and the evening, when everything is quiet and dark, and I am left to my wandering thoughts and self-pity. But, once I am up and have eaten my breakfast and taken my 9 or 10 pills, I begin to be progressively better as the day goes on. I am quite excited for Thanksgiving with my family. It will be the first time [most] of my siblings will have seen me post-treatment. I am a bit shocking to look at now.
Nov. 23-I need to have hope, keep faith and believe God is with me always. I need . let myself be flooded by the enormous embrace of love from all those around me, and even around the country.
Nov. 26 (first day of Hospice)-Living each day to its fullest potential, that is the goal. Sleeping, eating, exercising and engaging in merry fellowship is how I'll do this. I can do this with the will of God.
Thanksgiving 2002-Last Sunday morning, I was taken up to RWJUH after waking with pains in my liver. The doctor informed my parents and me the tumors in my liver and lungs were growing. This was obviously a shock to us but what was revealed next was heart-shattering. I was given an expected time frame of six months to live.I believe in miracles and continue to have faith. I will not let six months be the definitive! I pray that each of you will continue to be positive and to live life to its fullest.
Dec. 9-Dearest Friends and Family, as the Holiday season starts to take off, my health has turned somewhat sour. My nurse comes over more often, and eating, talking, listening, reading and writing are far more taxing than I ever imagined. I will try and remain as strong as I can for this holiday season as it signifies so much more to me this season than ever before.Thank you all for your love and support.I love you all so much! God bless you all!
Dec. 10 (Christmas list)-I want something very sentimental, such as a necklace with "mother" in English on one side and "mother" in Korean on the other, just to let [Mom] know she has and always will be my one and only mother.
Dec. 10-Death is not an evil at all, just a different blessing that requires a more positive frame of mind
and good reminiscence..
Excerpted with permission from "Through Death to Life" by John Aeby in Hi Families Magazine (May/June 2003), published by Holt International Children's Service at www.holtintl.org.
Editor's Note: The Hepatitis B Foundation sincerely extends its sympathies and gratitude to Helen Wise and her family for sharing Andrew's story with us. The loss of such a beautiful, articulate, and generous young man is heartbreaking for all who knew him
One Man's Story
A Daughter's Perspective
Cathy Pachuk, Ph.D.
Associate Professor, The Jefferson Center, Thomas Jefferson University
When my father was diagnosed with primary hepatocellular carcinoma (HCC), or liver cancer, about two years ago he looked to me for help in identifying treatment options. The diagnosis of HCC, difficult for anyone to handle, was extremely devastating to my father, who had already battled numerous life-threatening conditions and diseases.
No Stepping Back from Set Backs
In February 1970, during a routine physical, a massive thoracic/abdominal aneurysm was found on my father's aorta. The odds of surviving surgery were very low and the odds of surviving without serious complications, such as paralysis, were even lower. The only surgeon willing to perform the surgery was the one who pioneered the development of this type of surgery, Dr. Michael DeBakey, of Methodist Hospital in Houston, TX. My father was one of the first patients to undergo this type of surgical procedure. The 12-hour operation was a success. Within three months, my father was back on the golf course.
Due to complications from the aneurysm, however, one of my father's kidneys atrophied, leaving only one functional kidney. In addition, my father developed adult onset diabetes, congestive heart failure and an irregular heart beat that required insertion of a pacemaker. In 1992, my father was diagnosed with prostate cancer and treated successfully. Nine years later, the seemingly impossible happened: the cancer had metastasized and was now in his bones and spinal column. Currently, the cancer is being managed by hormone therapy.
Through it all, my father has been a fighter. He has refused to feel sorry for himself, lose control or break down. He has faced every enemy head-on with a fierce determination to gain the upper hand. My father's philosophy has always been that life is meant to be lived.
A Silent, Deadly Infection
Then one day, almost two years ago, my father was informed that he had liver cancer. Ironically, the same surgery that had saved his life 30 years earlier likely also resulted in his being infected with a deadly hepatitis virus. Silently working behind the scenes, the infection had finally taken its toll. My father had multiple liver tumors. He had about 6 months to live.
For the first time, I heard the tiredness in my father's voice. He could only take so much. It wasn't fair. As soon as he surmounted one obstacle, another appeared in its place. But, despite it all, he wanted to lick this one, too, and so the hunt for a treatment began.
Hunt for a Treatment
I spent the next few days speaking with hepatologists and scouring the internet for therapies, treatments and clinical trials. Unfortunately, I was learning that my father was ineligible for many standard treatments, including chemoembolization and surgery, due to his many health problems. His options were growing scarce and time was running out.
Then I spoke with Dr. Jack Wands, director of the Division of Gastroenterology and The Liver Research Center Rhode Island and Miriam Hospital(s). He listened attentively to my story and asked if I had heard of Dr. Damian Dupuy at Rhode Island Hospital, who was doing incredible things with radiofrequency ablation (RFA) therapy, including treating liver cancer.
New Therapy Extends Quality of Life
As soon as I got off the phone, I fired off an e-mail to Dr. Dupuy. Within 24 hours I received a reply - he would be happy to evaluate my father, but cautioned that this treatment was not for everyone. Within a few weeks, my father underwent several tests and was then on his way to Rhode Island for treatment. Dr. Dupuy was able to ablate most of the tumor masses and two months later, my father was back on the golf course. That was eighteen months ago.
Since that time, my father has needed two more RFA treatments. With every treatment, my father has recovered more rapidly. He is currently is leading an active life with my mother, spending time with his grandkids, and of course playing golf. We know that the cancer is not gone, but we will control it with ablation therapy for as long as possible.
This treatment has not only extended his life; it has allowed him to live it doing the things he most enjoys doing.
Editor's Note: The Hepatitis B Foundation sincerely thanks the Pachuk family for graciously sharing their story so that other families can learn from their experience. It is vital that individuals and families be aware that liver cancer can occur in those chronically infected with hepatitis B. Please feel free to email the Hepatitis B Foundation at firstname.lastname@example.org or call 215-489-4900 for more information about hepatitis B and liver cancer.
A Doctor's Perspective
Damian Dupuy, M.D.
Associate Professor, Department of Diagnostic Imaging at Brown Medical School, and Director of Ultrasound at Rhode Island Hospital
In addition to complete tumor eradication, radiofrequency ablation (RFA) can be used to control primary liver cancer in patients with no alternative options due to tumor size, tumor location or associated medical conditions. The daughter of one such patient who greatly benefited from the palliative effects of RFA has written her account of his story. With the patient's permission, I would like to share his case from the physician's perspective.
Mr. Pachuk presented to me with two large hepatocellular carcinomas (>7cm) in the right lobe of his liver approximately 18 months ago. Standard therapy for his disease would have been surgical removal of the right side of his liver. Mr. Pachuk's normal left lobe was sufficiently healthy enough to carry the work load. Unfortunately, Mr. Pachuk had a history of congestive heart failure and chronic renal insufficiency making him a very poor surgical candidate. Despite his medical problems, Mr. Pachuk lives a full life enjoying travel and golf and he is not ready to throw in the towel just yet.
His local physicians as well as specialists at a major cancer center were not aware of the benefits of RFA as a minimally invasive treatment option in cases such as his and he was given no treatment as his only option. This left him with a typical median survival of 4-6 months. Fortunately, his daughter works in the field of hepatology and her connections led her to me at Brown Medical School and Rhode Island Hospital where I had been using RFA as a palliative treatment option in patients with large liver tumors such as Mr. Pachuk's.
Overcoming Medical Complications
The first ultrasound-guided RFA treatment went very well, but I knew upfront that complete tumor eradication was out of the question; nonetheless, I did my best and approximately 80-90% of the tumor was killed. Normally, I follow patients with contrast-enhanced computed tomography (CT) or magnetic resonance imaging (MRI), but in Mr. Pachuk's case his renal insufficiency precluded use of intravenous CT contrast due to its toxic effects on the kidney. Compounding this management dilemma, Mr. Pachuk developed a cardiac arrhythmia requiring a permanent pacemaker. This now prevented him from being followed with MRI since the magnetic fields interfere with pacemaker function.
Fortunately, Mr. Pachuk's tumor made a protein, which approximately 50% of primary liver tumors make, called alpha fetoprotein (AFP). Therefore, I have been following Mr. Pachuk's disease status with the AFP blood test. He has had two additional RFA treatments using CT guidance, whereby his tumor has been retreated to keep it from growing into the vital part of his liver where the major blood vessels and bile ducts are located. Walking the fine line between killing enough tumor without hurting the overall health status of Mr. Pachuk has been challenging enough, but compounding the inability to clearly see the areas of viable tumor has made it even more challenging.
A Physician's Reward
Despite the complexities of his disease and overall health status, Mr. Pachuk continues to live a normal life probably more active than most people in their 80's. This desire to live life to its fullest is most refreshing and as a physician, I find it very rewarding to be able to apply state-of-the-art technology in a clinical situation where no other hope exists.
I thank Mr. Pachuk and his family for their bravery and open-mindedness during the course of his RFA treatment. I will continue to do my best at keeping his quality and quantity of life the main goal of therapy. Hopefully, those who hear this story may share this knowledge so that others in similar situations may benefit from this truly remarkable treatment option.
About Radiofrequency Ablation
For decades, direct injection of absolute ethanol had been used to treat small primary liver cancers with success rivaling surgery. Recently, radiofrequency ablation (RFA) a heat-mediated therapy has replaced alcohol due to its ability to treat larger lesions with fewer treatments.
RFA is a technique whereby an alternating current in the frequency of radio waves is emitted from the tip of an electrode or needle placed directly into a tumor. The alternating current flowing back and forth through the tissue causes frictional heating and coagulation of tumor.
For the treatment of primary liver cancer, RFA has achieved complete cell death in over 85-90% of cases in lesions smaller than 5 cm, with less than a 10% local recurrence rate. Unlike surgery and many other treatments, RFA can be performed many times in the same patient. This is very important in the hepatitis B population because these patients are prone to develop tumors in more than one site in the liver over time.
The RFA procedure is a very safe and non-toxic treatment. The procedure is almost exclusively performed on an outpatient basis with the administration of intravenous medication to alleviate pain during the procedure. After the procedure, patients are given a small bandage and sent home with narcotics for a few days to reduce discomfort at the treatment site.
Until modern medicine can prevent the formation or stop the growth of primary liver cancer at the gene level, focal ablative therapies such as RFA will be mainstays in the treatment of primary liver cancer for years to come.
Tragic End for Young American Asian Doctor
with Hepatitis B
By Joel P. Engardio
From our table at a sidewalk cafe in August 2000, my partner Mark and I took turns pointing out things that made us smile. Our mood was sublime, like the day, as we headed to an open-air jazz festival. Until a sharp stomach pain made Mark wince and double over. Was it the ulcer he feared? At 30, Mark Lim was a young doctor saddled with debt and the challenge of building a career after eight sleepless years of medical school and training.
Mark didn't have an ulcer. An ultrasound of his abdomen showed an ominously patchy liver. A biopsy confirmed the worst: cancer. His liver was riddled with so many out-of-control cancerous lesions that neither surgery nor transplant was possible. Chemotherapy would only slow his inevitable, insufferable demise 14 months later. But the question remained, how did such an otherwise perfectly healthy young man, who had a gym-toned body and never drank, end up with the organ of a hard-living alcoholic twice his age? The answer was chronic hepatitis B, a virus that can silently harbor in a healthy liver for decades before unleashing its destructive power.
Mark knew about his hepatitis. He discovered it from blood tests required by his medical internship. But experts at the prestigious Midwestern hospital where Mark did his residency told the 26-year-old not to worry. He was a "healthy" carrier, they said. His symptom-free kind of hepatitis wouldn't have to be monitored for liver cancer until he was in his 50s or 60s. Good advice, if Mark were not an Asian man. Had he or his doctors been trained to know that Asians are at accelerated risk because they are typically infected as children, he would have immediately gotten regular ultrasounds and blood tests to catch the cancer that killed him at 31.
Liver cancer is rampant in Asia. The main culprit is chronic hepatitis B, a virus transmitted by blood or semen. Exposure to it at childbirth is the real problem, because that's when the risk of chronic or lifelong infection is greatest. Since it can take 30 years to manifest, all adult children of Asian immigrants -- even those born in the United States -- are at risk.
Before Mark died last October, he became a spokesperson for the Jade Ribbon Campaign, urging all Asians to check their hepatitis status. As a doctor -- and a victim -- Mark felt it was his duty to speak up about what has become the greatest health disparity between Asians and Caucasians. He was moved not only to fight the disease that was killing him, but to wipe out the ignorance that had allowed the problem to get so out of hand. Jade Ribbon is just one voice trying to sound the alarm of a health crisis to come.
Confronting his own mortality wasn't easy for him. "It's scary to think of your life in months, instead of years," he told me as his death approached, our dreams of that day at the sidewalk cafe shattered. His life was so short, and his death so horrible.
Mark was dedicated to saving lives as a doctor. He can't do that anymore, but his story can. In the end, the most he could do was hope his words might inspire his medical colleagues to offer -- and his Asian peers to seek -- the information that can save thousands like him from his fate. If only they listen.
Excerpted from articles by Joel Engardio that were originally printed in the San Francisco Weekly 5/1/02 and San Francisco Chronicle 1/3/03.
Editor's Note: The Hepatitis B Foundation thanks Joel Engardio for graciously sharing his story so that others can learn from Mark Lim's tragic death: it is important that those who may be at high risk for hepatitis B are tested as soon as possible. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor.
Running was Adrian Elkin's passion. As the youngest of five children, Adrian grew up running, trying to catch up with his older brothers and sisters. In high school, he discovered cross-country running and continued running after he went to college.
During Adrian's sophomore year at Southern Oregon University, he was unexpectedly diagnosed with liver cancer due to chronic hepatitis B. This became his toughest race ever. Adrian courageously underwent months of surgery, chemotherapy, and related treatments to beat the cancer. During the last two months of his life, he devoted his time to organizing a race to raise awareness about liver cancer and hepatitis B.
Adrian and his family started work on the first Answer to Cancer Race in June 2003, racing against time. In six incredible weeks, they were ready. On August 3, the day of the race, he fired the starter's pistol and the runners were off. Eight days later, Adrian Elkins died at the age of 20 years old.
Adrian began life as an abandoned baby at a Calcutta orphanage. At three months, he was adopted by the Elkins family from McMinnville, Oregon. "He was the perfect little boy," his mother Judy recalled, and "we doted on him."
Although he appeared healthy, Adrian and his parents always knew he was a carrier of hepatitis B due to a blood transfusion he received as a premature infant in India. However, they never expected the disease to manifest itself as a rare type of liver cancer called hepatocellular carcinoma (HCC). "Doctors said he was at little risk of problems because of the hepatitis B," his mother said.
Judy Elkins now wishes that they had been on the lookout for cancer, with regular screening and specialized medical care. But the possibility seemed so remote. "We heard what we wanted to hear," she said. "Now we know more than we wish we had to know."
On the first day of his sophomore year in college - Sept. 30, 2002 - Adrian awoke feeling funny. In retrospect, he realized that he had felt tired all summer. He had attributed his symptoms to his busy schedule of working and training for a major relay.
As he returned to his dorm room after breakfast, he began having a lot of pain and difficulty breathing. A friend drove him to the hospital emergency room, and at first, physicians thought Adrian was having a gallbladder attack. Then, an ultrasound test revealed that his liver was extremely enlarged. A liver biopsy was done.
Days later, the family learned that Adrian had hepatocellular carcinoma, or liver cancer. It was devastating news. Still, there was hope. Adrian was an excellent candidate for surgery to remove the cancer, since it appeared to involve only the right lobe of his liver. He started his first round of chemotherapy while waiting for surgery.
Sadly, the operation brought more bad news. The cancer wasn't confined to the right lobe after all - the left lobe was affected, too. Worse, the cancer had also spread to his lungs. Adrian battled his disease for ten months.
Adrian's legacy is a gift to generations of patients in their fight against liver cancer. Thanks to the generous support of many, the Answer to Cancer Race 2003 raised $24,000 for three charities dedicated to liver cancer.
Adrian's final gift is the Answer to Cancer Race that will help generations of patients in their fight against liver cancer. He turned his passion for running into a legacy of caring that will endure.
Editor's Note: We thank the Elkins family for sharing their story with the Hepatitis B Foundation and extend our admiration for Adrian's commitment and dedication to educating the public about liver cancer and hepatitis B. This article was excerpted from their emails and press releases on their Answer to Cancer Foundation at www.answertocancer.org.
One Woman’s Life with Chronic Hepatitis B Brings Hope to Others
At first glance Sheree’s life appears plagued by illness and the loss of a much-loved hospital nursing career. Despite the challenges imposed by living with chronic hepatitis B, however, Sheree has endured and reinvented herself with the help of technology and a love of helping others.
Sheree lives in the rolling green hills of southern Ohio as generations of her family before her. She has penetrating green eyes and speaks with a gentle Appalachian accent. Neither she nor her family members fit the profile of someone who might be at risk for hepatitis B.
In 1981, at age 26, Sheree began experiencing nausea, fatigue and abdominal pain. “I kept wondering why I was so darned tired. Was it because I had been working at least two to three double shifts a week and had a young child? I was young, I shouldn't have been so tired,” she recalled.
Soon she could tolerate only burnt toast, oatmeal, and water. “I diagnosed myself as having gall bladder problems and went to a surgeon to have it removed,” she said.
“I was surprised to wake up in the hospital’s isolation ward, which meant no one could come in without protective gowns and gloves. I thought, what is going on? Surgery patients aren’t isolated.” The doctor told her she had “some kind of hepatitis.”
Further tests revealed that not only did she have chronic hepatitis B, but she was also suffering liver damage from the virus. “I remember thinking, ‘Oh my God, what now? How did I get it? What about my son and husband?” Fortunately, test results showed that neither her son nor husband was infected.
Sheree had worked as a nurse and assumed she had become infected through exposure to infectious blood or body fluids from a jaundiced patient she had cared for. She eventually returned to work, but in the months that followed, suffered relapses and frequent hospitalizations due to fatigue and abdominal pain related to hepatitis B.
At age 26, Sheree found she couldn’t sustain the workload of caring for both patients and family.
She became pregnant with twins
four years after her diagnosis and her obstetrician recommended an abortion because of her hepatitis B infection. “I just couldn’t believe his advice,” she recalled.
Sheree’s nursing experience and outrage/disbelief/anger kicked in and she set out to find an infectious disease doctor who could answer her questions about the risk her hepatitis B posed to her unborn children.
“Thank God I found a specialist who reassured both my doctor and me that the twins could vaccinated at birth so they would be protected from the hepatitis B virus,” she recalled. “I found an excellent pediatrician who prepared everything in advance. When my C-section was scheduled, the hepatitis B vaccine was ready and my boys were immunized immediately to prevent infection.”
As years passed, Sheree continued to suffer disabling fatigue and relapses from her hepatitis B. As a result, she kept trying to learn more about hepatitis B. In 1997, she met Steve Bingham and John Kirk through an email list designed for patients with hepatitis B or C. “I probably stood out because I kept asking questions about hepatitis B that no one could answer,” she recalled.
In 1998, Sheree became a co-host of a new email list - the Hepatitis B Information and Support List (hblist.net) – which remains the only online support group for people living with chronic hepatitis B.
She also created a comprehensive online “Hepatitis B Research Archive” of medical and general news articles on hepatitis B.
“I guess it’s the nurse that’s still in me. I love helping others and doing research. Answering people online and posting the latest medical information on my research website is one way I can help them,” Sheree said.
In 1999, Sheree’s family suffered another enormous blow. Her younger brother was diagnosed with hepatitis B just a few weeks before he died suddenly and tragically of liver cancer.
After his death, everyone in the family was tested. It turned out that several of Sheree’s immediate and extended family members were also found to be chronically infected with hepatitis B.
Her experience as the HB-List’s “Mom” was extremely useful as Sheree helped guide her family through the complexities of understanding hepatitis B, the tests, the management issues and treatment options.
Sheree’s active involvement with the online HB-List and Research Archive revitalized her nursing skills and utilizes her compassionate and personal understanding of the issues faced by people living with hepatitis B. Her email messages, signed “Hugs, Sheree,” confer a kind reassurance to everyone. You can almost hear her maternal “clucking” as she reassures list members that their hopes and dreams can remain intact, despite their chronic infection.
While Sheree has ultimately achieved a non-traditional nursing career that utilizes her medical expertise and research talents, her chronic hepatitis B infection continues to cause liver damage (she has mild cirrhosis) and an unusual amount of pain, which are constant.
“There are days when I think, ‘why do I have to go through this?’” she admitted. “But most of the time, I try not to dwell on it. These are the cards that I’ve been dealt and I have to play my best hand with them.”
*Since this story was originally written, Sheree lost her battle with chronic liver disease.
Successful Treatment of a Child Living with Chronic Hepatitis B
When Helen Kane and her husband adopted their daughter in China, they knew nothing about hepatitis B. They certainly never imagined that their beautiful new baby could have hepatitis B. And they had no idea that their future would be filled with hospital visits, blood tests, and a paralyzing fear of losing their child to this unknown liver infection.
Among the most difficult challenges they would ultimately face was whether to treat their child with a potent drug called interferon that required three painful injections each week and promised a lackluster 30 percent chance of success.
This was a decision the Kanes, a middle-class professional couple who live outside Washington D.C., never thought they’d be making when they adopted 10-month-old Morgan. In China, their daughter had tested negative for hepatitis B, so the couple assumed she would be free of the virus that has infected 60 percent of the Chinese population and chronically infects 10 percent.
Shortly after they returned home, Morgan was retested for hepatitis B, as recommended for all international adoptees. A week later, a nurse called with the results.
“I remember that call clearly,” Helen said. “I was at an outdoor restaurant having a cup of coffee with Morgan in her stroller when my cell phone rang. The nurse told me Morgan had a ‘touch’ of hepatitis. I got off of the phone and started crying. I called my husband, but it was too difficult to explain to him over the phone.” With that phone call, the family’s life was turned upside down.
“In the beginning, we were absolutely devastated,” Helen recalled. Tests indicated that Morgan had a high viral load (a lot of virus in her bloodstream) and that the infection was already causing significant damage to her liver. “Of course I had no idea then what the test results meant, or the significance of the various hepatitis B antigens and antibodies.”
The Kanes took Morgan to a pediatric gastroenterologist to the Johns Hopkins Medical Center. “I can still remember asking our doctor why we should treat Morgan, given the low chance of success and the difficulty of treatment,” Helen recalled. “Her reply was, ‘because you have to try anything you can to prevent her from ever needing a liver transplant.’ Her statement truly had a profound effect on our decision. We decided that even though the odds were low, we had to try.”
Four months after arriving from China, Morgan underwent her first liver biopsy. This is a procedure that involves removing a small sample of liver tissue with a surgical needle.
“One of the most difficult things to do was to sit with Morgan for nine hours while depriving her of food before the procedure,” Helen said. “She went from being a happy baby, to a quiet, withdrawn baby wondering why we wouldn’t feed her.”
“I’ll never forget carrying my little one into the operating room and trying to soothe her as they placed the mask over her face,” she continued. “Later, we could hear her screaming as we entered the recovery room. She was so angry with us! It was difficult trying to comfort a terrified baby when she has a board strapped to her hand and an IV hooked to it.”
That night at the hospital, Morgan received her first interferon injection. Later at home, the Kanes began to administer the injections three times a week. They designated a guest room that Morgan rarely played in as the “shot” room. “We would have everything ready for her so all we did was quickly give her the shot and then immediately calm her by placing her in a warm bath following the injection,” Helen recalled.
Morgan also underwent bi-weekly blood tests to monitor her response to treatment. “The interferon shots were tolerable, but the blood tests were very hard on her. Morgan could sense when it was time for a blood draw and became withdrawn. When she began to talk, I remember the pain I felt when I told her we were going to get her blood drawn and she screamed back, ‘No! No blood!’ When the words came out of her mouth, I was so taken aback,” Helen said.
As with most children who receive interferon for chronic hepatitis B infections, Morgan had few side effects from the drug. “She did experience some muscle and joint pain, and she was certainly more fatigued than the average child, but as a baby she had the luxury of sleeping, as opposed to adults who must resume work,” Helen said.
Despite the difficult treatment, Morgan’s personality blossomed. She was a cheerful and resilient patient with an outgoing personality. She quickly became a favorite among clinic staff.
Unfortunately, six months of interferon did not reduce Morgan’s high viral load or liver damage. “I remember talking with another mother whose daughter was also not responding to interferon treatment,” Helen recalled. “She told me she had finally accepted that her family would always be living with hepatitis B. Her statement was a wake-up call to me. It was the first time I realized we might be living with Morgan’s hepatitis for the rest of her life and I began to actively research hepatitis B on my own.”
Since interferon did not work, Morgan’s doctor recommended trying the oral antiviral drug called lamivudine (Epivir-HBV), which at the time had not yet been approved for children (it was approved for adults in 2002, and shortly afterwards for children).
At age 2 1⁄2 years, Morgan required a second liver biopsy before starting one year of lamivudine treatment. After nine months on lamivudine, Morgan began to respond to the drug and her viral load decreased to undetectable levels in the bloodstream, which meant there was a lot less virus attacking her liver.
Current drug treatments such as interferon or lamivudine rarely result in a “complete cure”, which is achieved only when the immune system gets entirely rid of the virus and then develops protective antibodies against future exposure to the virus. For Morgan, though, after a full year of lamivudine treatment, she tested negative for the hepatitis B virus.
By Christmas, Morgan tested positive for the protective antibodies – she had experienced a complete cure from a chronic hepatitis B infection. “It was the best Christmas present we could have ever received,” Helen said with tears in her eyes.
It has been three years since Morgan cleared the hepatitis B infection. Today, she is a bubbly, seven-year old with no signs of liver damage.
“It’s funny, we never did ‘celebrate’ like you might think we would when Morgan cleared the infection,” Helen explained. “We are still almost afraid to talk about it, as if it would tempt fate. We know Morgan will always be at higher risk for liver disease than someone who has never been infected. But we couldn’t be happier with her successful treatment.”
Breaking the Cycle of Hepatitis B Infections from Mother-to-Child
Michelle is one of 1.25 million Americans who live with chronic hepatitis B. Michelle was born in 1969 to an American father and Vietnamese mother, who had met and married during the Vietnam War.
She grew up healthy and happy in Kentucky, unaware that her mother had unknowingly passed on the hepatitis B virus to her at birth. When Michelle was born, there was no hepatitis B vaccine available to prevent this infection. Had she been immunized within 12 hours of birth, she would be free of infection today.
“I found out about my infection through a routine blood test during my first pregnancy in 2000,” Michelle said. Kentucky is one of the few states in the country that require pregnant women to be screened for hepatitis B. “The nurse called me at home to tell me my hepatitis B test had come back positive. I immediately thought it was a lab error.”
“Eight years earlier, I had donated blood and was told that I had hepatitis B. I was re-tested and they told me I had never been exposed to hepatitis B and was free of infection,” she recalled.
But after the hepatitis B test came back positive during her pregnancy, Michelle went to see a specialist for more tests. This time, he confirmed she had chronic hepatitis B. Most teens and adults infected with the hepatitis B virus experience only a brief or acute infection. However, when newborns like Michelle are infected, they face a 90 percent risk of developing a chronic or life-long hepatitis B infection.
“Needless to say, after my diagnosis I experienced the emotional succession of denial, depression and then acceptance of my hepatitis B infection,” she said.
Her immediate concern was to make sure her newborn daughter would not be infected with hepatitis B.
“During my delivery, I made sure the hospital staff was aware of my hepatitis B, and I constantly reminded them to make sure my baby received the hepatitis B vaccine within 12 hours of her birth, which prevents mother-to-child infection 90 percent of the time.
Fortunately, the hospital staff was on top of things and my daughter was vaccinated properly and today is free of hepatitis B.”
Michelle’s husband also tested negative for hepatitis B after her diagnosis and was quickly vaccinated.
After much pressuring, Michelle had her parents tested for hepatitis B. “When my mom asked her doctor to test her for hepatitis B, her doctor asked ‘Why?’ He saw no reason to test her, even though Asian-Americans are at extremely high risk of hepatitis B.”
Her mother’s hepatitis B test came back positive. Later that year, Michelle found out that her maternal grandmother, who lives in the United States, also tested positive for hepatitis B. “After this revelation, our family history came pouring out,” Michelle explained. “I learned that another of my mom's sisters also has hepatitis B, as do other family members.
Vietnam, like other countries in Asia, has very high rates of chronic hepatitis B infection, which is why one in eight Vietnamese-Americans has chronic hepatitis B. Hepatitis B is the second-leading cause of cancer death in Vietnamese-American men because it is often not diagnosed or treated until serious liver disease has occurred.”
Today, Michelle has a second child, who was also promptly vaccinated at birth and remains free of hepatitis B.
“Knowing that both my children were properly immunized against hepatitis B at birth gave me great confidence that they would be free of hepatitis B,” said Michelle. “Sadly though, this means that only my children’s branch of my family tree will be free of hepatitis B. I wish I could say the same for the rest.”
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)