Maggie McGehee never imagined something as simple as a letter would change her life. In fact, she almost tossed it in the trash, thinking it was just a solicitation from the blood bank she had recently donated to.
But when she opened it, McGehee discovered that her blood had tested positive for hepatitis C — and it came as a complete shock.
“I donated blood April 2015 — it was the first time I donated blood,” she tells Yahoo Lifestyle. “About a month later, I got a letter that I had hepatitis C.”
The disease can be transmitted in several ways, including through injecting drugs, getting unsafe tattoos and piercings, or sharing a toothbrush or razor with an infected person. But the 37-year-old didn’t have those risk factors. “My first reaction was it must be an error,” she says. “I haven’t done anything that would put me at risk for this. It must be a false result.”
So McGehee went to her doctor to get tested again. “Even at that point I thought, ‘There’s no way. It’s false.’ I just thought this isn’t possible,” she says. “When that second test came back [positive for hepatitis C], I thought, ‘This is a real thing.’”
McGehee dove into research about the prognosis and treatment for the disease before telling her parents so they wouldn’t be worried. “I wanted to tell my parents: ‘Here’s what I’m going to do.’”
In the meantime, she was still trying to unravel how she could have gotten the disease She learned that the virus can be passed from mother to child during childbirth, so McGehee’s family got tested for the virus. “My mother doesn’t have it,” she says. “No one in my family has it.”
McGehee, who was born two months premature and was in a hospital incubator for almost a month as an infant, realized that her only risk factor was a blood transfusion. “When I talked to my family, I asked, ‘When I was born and in the hospital, did I get blood transfusions?’” she says. “And my mom said, ‘Yes, lots.’”
When McGehee was born in 1981, the hepatitis C virus was eight years away from being identified, according to the Centers for Disease Control and Prevention, and routine blood testing for the virus, such as for transfusions, didn’t start until 1990, followed by more sensitive and accurate testing in 1992. “It was in the blood supply for a lot longer without anyone knowing,” she notes. “And you can have it for decades without any symptoms that you recognize.”
She adds: “I was really lucky. I had for 34 years before I knew.”
For McGehee, who had dealt with several health issues for years, not knowing that hepatitis C was to blame despite doctor’s visits, it was like a light bulb went on with the diagnosis.
“As far as I can remember, I’d get nauseous every month or so, I had some skin rashes and itching, and Raynaud’s disease, when you lose blood in fingers temporarily,” she says. “I had tested high for bilirubin, a substance your liver creates when it’s breaking down old red blood cells. I had a really high level, but they just diagnosed it as Gilbert’s syndrome [a harmless liver condition]. Nobody took any of these signs and said, ‘This looks like hepatitis,’ especially since I’m not a baby boomer.”
McGehee had to jump through several hoops before she could get the medicine to treat her condition because she wasn’t considered sick enough for insurance coverage. Through Caring Ambassadors, which focuses on patient education and advocacy, and their hepatitis C program, McGehee was connected with the Hepatitis Education Project, located in her city, Seattle, where case workers helped her navigate the process of trying to get the medication she needed.
After 10 months, she finally received drug coverage from a patient assistance program. She took two medications and a total of nine pills a day for 3 months. “At this point, I’m cured, which is incredible,” she shares. “I recognize my extreme level of privilege in having been able to access that.”
McGehee’s advice to others coping with hepatitis C? “I would encourage people to not give up and get treatment,” she says. “You can get to it.”
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