Patient Stories

Ed’s Story: A New Outlook on Nutrition

 Over the next few weeks, I got sicker and sicker…and turned a horrible shade of yellow. I have never felt so sick that. I didn’t even know about Liver Blood Tests. For the rest of 2005, I spent time at home, sleeping much of the day.

All this time, I never thought about proper Liver Tests. I continued my diligence with nutrition and my diet. By this time, I mostly ate vegan, but not exclusively. I maintained my weight loss…and started introducing seafood to my diet. The Epivir HBV and Hepsera were still part of my daily routine. My next tests were in November 2006, And when my AST was 18, ALT 16 and viral load had dropped below 100. Also, at this time, the tests returned negative for the E-antigen, but I was still negative for any antibodies.

Then came something nothing short of miraculous. Just recently, in February 2007, my test results returned positive for the antibodies…the virus had been eradicated…I was cured! My doctor explained they were looking for an antibody level 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 read confirmed what my doctor told me…this does not happen often! One-and-a-half years after being diagnosed by Liver Blood Tests 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 sit in my cupboard as a reminder.

Shifting perspective

I am convinced my diligence with nutrition and diet went a long way in giving my liver and my body as much help as possible in fighting this. That, combined with the drugs and some help from God, gave me 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 several 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 I have read.

A Mother’s Story

I have been a single parent of a wonderful son for 13 years. I always dreamed of adopting a daughter and began adopting 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 exhaustive research into the issue of adopting “older” children, including attachment disorders and the potential for learning issues.

Then, I received a referral of a beautiful four-year-old redhead looking 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 – hepatitis B was. She could not give much clarity to the situation, so I began another exhaustive research into this disease with which I was only very vaguely familiar.

Don’t search your symptoms.

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 email 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. The paediatrician has evaluated her, and she is scheduled for her first pediatric hepatologist (liver specialist) appointment. Based on the foundation’s advice, I had my son’s Liver blood tested to make sure his hepatitis B vaccine worked, and I also received the vaccination series myself. My three sisters also received the vaccinations!

Growing up

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 inherent in raising a teenage girl in the coming years!)

Potential adoptive parents hear it over and over, “Adoption is a leap of faith.” Children may enter our families with challenges, learning issues, and attachment concerns. So, adoptive parents sometimes have to close their eyes, open their hearts, and leap.

I took that leap and adopted a PERFECT little girl who 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!

Sincerely,

A Grateful Mom

A Young Guatemalan Woman’s Story

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 Liver 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 could express my feelings in three words – 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 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 people assumed wrongly that you can only get hepatitis B through drugs and unprotected sex.

Life is not fair

I spent many years crying, complaining, blaming, and playing the victim role until I realized there are two solutions for situations like this: you sit and cry or enjoy the beauty of being alive and make every day count. I decided on the second choice.

In Guatemala, getting the HBV DNA and other important Liver blood tests for this chronic disease is impossible. Fortunately, I have been very lucky. My parents, family, and friends have 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. I want to study a specialization in hepatitis B and create a foundation in my country. The day I can help ensure 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.

The good news

After receiving good news about my biopsy results, I happened to read the foundation’s B-Informed newsletter. I was suddenly inspired to email Dr. Block to tell him about my dreams. Honestly, I never imagined that he would answer my email! I still remember feeling happy 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 also 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 with Liver blood tests. I have worked as a science teacher for five years and 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.