Personal Stories: Sheree’s Story
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 (www.HB-List)
– 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.”