Barbara Burlingame is a survivor of the 2000 Oklahoma outbreak, in which nearly 100 patients were infected with viral hepatitis through reuse of syringes at a pain clinic. Here is her story, in her own words.
I never thought this could happen to me. I never thought I—or anyone I know—would be infected with hepatitis C while
Starting in March 2002, I was tired all the time. I felt lousy. I would come home from work for lunch and take a nap. I had to set an alarm, or I would fall asleep and sleep through the afternoon.
I went to the doctor. Because I have no risk factors, he didn’t even think about viral hepatitis. My liver enzymes were sky high, so I went back. My gall bladder was removed. That didn’t help. My liver enzymes remained abnormal. I went out of town for my grandmother’s funeral. Everything was a struggle. The normal routines had become difficult. Traveling was exhausting.
When I returned home, I received a letter from my primary care physician. “Where are you? You have hepatitis C. You need to come see us immediately.”
Tests came back as “HCV genotype 1A.” My GI doctor, Dr. Bird, couldn’t figure it out. Fortunately, he fancied himself a detective. Six of his patients, all with no apparent risk factors, had hepatitis C.
All of us were patients in Dr. Lewis’ pain management clinic in Norman, Oklahoma. Healthcare providers were reusing syringes. That’s all it takes for transmission of bloodborne pathogens.
I admire the work of HONOReform and Evelyn McKnight—and the valuable work of the One and Only Campaign, led by the CDC—and if you take away anything at all from my blog post today, take away this: If you’re a provider, never use a syringe on more than one patient. And if you’re a patient, always be sure that the providers are using “one needle, one syringe, only one time.”
Back to my story. I was in shock. Scared, angry, betrayed. The most devastating emotions I have ever felt. Like a tornado ripping through my emotions. I didn’t sleep for a week.
Finally , I called my friend Susan Rogers. At that time, Susan was assistant municipal attorney in Norman. Thank God for Susan. She helped me in so many ways.
I needed support. As I look back, I remember certain difficult moments. I was at my folks house. I was pricked by a stray pin. My six year old nephew. Joe, immediately jumped under the table to find the straight pin. The one that now had my blood on it. Fortunately my brother reacted quickly and made Joe get up. That point in time is when it became an earth shattering realty for me. I have hep C. I then had to explain to a six year old that I could hug and kiss him and that would be fine. I had to explain that my blood was sick and he could not be near it. A conversation I should have never have had to have.
I went to renew my driver’s license. I was always listed as an organ donor. That was taken from me. In addition to so much else.
I started to get busy, working on my own behalf and on behalf of the other Oklahomans. I attended and spoke at multiple hearings. I talked with members of the media. Anything I can do to help prevent this from happening to someone else, I’m going to do it, I said.
Four years after I was infected, I started treatment. Forty-eight weeks of interferon and ribivirin. I crossed each day off the calendar. I didn’t even live day by day—I lived minute by minute. I took medication on Friday…and became so sick I couldn’t go to work on Monday, and sometimes not even on Tuesday. I lost all my hair.
Finally, I cleared the virus. I am tested once a year, just in case.
It was such a struggle. But there are good things, moments of hope, intermixed. A friend from far away drove in periodically to offer support. Another friend offered to shave her hair—to be just like me!–as part of a charity event. People care. I learned to be unafraid to show love and concern with others. My beloved dog Clara never left my side.
Life got back to normal. Then, when I was getting ready to go work out one day in early April of this year, I heard my friend Susan Roger’s voice. I couldn’t believe it. She was being interviewed on the CBS Evening News. Susan is now president of the Oklahoma Board of Dentistry. Wayne Scott Harrington, a Tulsa dentist, was being accused of a wide variety of bad practices. Gruesome stuff. Using rusty instruments on patients, reusing needles, the list goes on and on.
As far as Tulsa is concerned I wish I could wrap them all up in one big bear hug. I know the feeling that you have lost control of your own life. I wish I could tell them all that it can get better. I came out the other side and so can they. My heart and prayers go out to all of them and their families.
Next week on this blog, Barbara Burlingame will help provide insight on the recent incident, involving unsafe injection practices on dental patients in Tulsa.