Hepatitis C

When Bettye Crockett's son told her he'd been diagnosed with Hepatitis C, she didn't know anything about the disease, its symptoms or its treatment.

That was in 1998. Today, she's written a volume about her son's treatment and his battle with the disease and is planning a book about how families are affected by it.

Crockett formed the area's only Hepatitis C support group during the months when her son, A.J. Stembel, was so ill.

And now the mother and son are on a crusade to educate people about the disease and how it can be treated. "It doesn't matter how you got it, it needs to be treated," Crockett said.

Hepatitis C is a disease that affects the liver, causing it to stop functioning. It is spread through contaminated blood or needles. People affected by the disease often have mild symptoms for years before a diagnosis.

Only about a dozen people have come to the support group meetings, which are held on the fourth Thursday of each month at Option Care in Cape Girardeau. But there are weeks when Crockett gets five or six phone calls from someone who's recently been diagnosed.

"They're embarrassed that they have it or they don't know they have it," she said.

Right after her son's diagnosis, Crockett began researching the disease on the Internet and in medical books. She wasn't panicked then because she didn't know how serious the disease was. But when Stembel's health deteriorated even more, she urged him to move from Nashville, Tenn., to Cape Girardeau.

"We did everything and saw every doctor in town," she said. But because Hepatitis C wasn't well known, many doctors in Cape Girardeau weren't sure Stembel would get the care he truly needed. He was referred to St. Louis for more tests and appointments.

There, the pair found a support group at Barnes-Jewish hospital. After a 2 1/2 year wait, Stembel underwent a liver transplant at the St. Louis hospital last June. On Good Friday this year, he had a kidney transplant there. He just received a good report at his one-year checkup for the liver transplant last week, and he says he's healthier than he has ever been.

Even with checkups and daily medications, "it's better than the alternative because I'm here on a beautiful day," Stembel said.

He credits his mother's support and knowledge with his recovery. "She was my Florence Nightingale," he said.

Crockett has a giant three-ring binder filled with pages of information about her son's treatments. She recorded every hospital and doctor visit, the dosage of his medications and any changes in his appearance or attitude.

Those notes traveled with her to every doctor's appointment or emergency room visit. "This saved my life," she said.

And the notes will be useful for the book she intends to write.

While the notebook helped his mother through the transplant, Stembel also gives plenty of credit to his organ transplant coordinator and his brother, Brett, for their help and encouragement.

"I had been so sick with the liver disease that I lost my faith -- not my faith in God but my faith in myself," he said.

It was support from family and friends that kept him going as he awaited the kidney transplant. But when it came time for a second organ transplant in April, Stembel knew he was fortunate.

"God led me to a good place to get the kind of care that I needed," he said.

ljohnston@semissourian.com

335-6611, extension 126