Rare disease nearly costs Havelock woman her life

For more than two years, Machelle Shriver had been in and out of emergency rooms, enduring test after test at various hospitals around the state.

Her chronic nausea gradually became chronic vomiting. She could no longer eat solid food and had even begun to throw up what liquids she drank.

"I thought I was going to die," said Shriver, from Havelock.

In the span of a year, she went from weighing 140 pounds to 97.

"I was getting no nutrients, and my hair had started to fall out," she said.

After many false starts, she finally got a diagnosis - gastroparesis, a stomach disorder in which food goes undigested because the stomach muscles are weak or not working at all. The disorder usually affects people with diabetes who often have nerve damage because of the disease.

But because Shriver didn't have diabetes, the treatment found to be marginally successful for diabetics didn't work for her.

She said she began searching for treatment options on the Internet. She learned about the use of neurotransmitters through a manufacturer's Web site and found the name William Cloud, a surgeon on the medical staff of Blue Ridge HealthCare's Grace Hospital in Morganton.

Cloud is one of only a handful of surgeons in the United States and one of three in the Southeast trained to implant a neurostimulator, a kind of pacemaker that sends mild electrical pulses to the lower stomach.

Without much hope, she packed her thick medical file and headed west - a six-hour drive from her home in Havelock.

Cloud said if Shriver didn't have the surgery soon, she would be too weak to survive the operation.

"He gave me six months to a year before this disorder would eventually kill me if I didn't have the implant," Shriver said. "In all honesty, if it wasn't for Dr. Cloud, I wouldn't be sitting here today."

Cloud said gastroparesis is an unusual and rare disorder.

"Someone has been doing their best to treat them for a long time," he said. "But most physicians won't see one of these patients in their entire medical career, so it's not a diagnosis that immediately comes to mind."

Cloud said the stomach operates much like the heart. However, when the electrical tissues responsible for generating muscular activity fail to work, the stomach doesn't empty and food goes undigested. "Everything I ate just stacked up and didn't go anywhere," Shriver said.

Cloud said that causes the major problems of the disease.

"The stomach grinds up the food and then empties it into the intestine where nutrition is absorbed," he said. "If the intestines aren't getting nutrients, then the rest of the body doesn't either."

People with gastroparesis feel full after eating a very small portion of food. They may become bloated and most will throw up, he said.

"The typical patient I see usually has been sick for about a year, sometimes longer," Cloud said. "They've gone through different tests and evaluations before finally getting the correct diagnosis. It's a rare disorder."

Though diabetes is often linked to gastroparesis, Shriver believes an operation for a perforated ulcer in 2007 may have led to her condition.

Cloud said most patients don't require surgery for gastroparesis, but Shriver's case was severe.

Cloud said patients with the condition begin to lose weight because of vomiting.

"Most have rapidly lost at least 30 pounds by the time I see them," he said. "The skinniest patient I had weighed 74 pounds. It's unbelievable that she's still alive."

The neurostimulator procedure takes about an hour, and the patient stays in the hospital around three days, Cloud said. The surgeon creates a pocket under the skin for the battery device - about the size of a pocket watch. The system has two wire leads that are attached to the outer wall of the stomach.

The leads are pulled through the abdominal wall and hooked to the battery.

"You can feel the battery under the skin," Cloud said.

After surgery, the patient returns to Cloud every three months to check the electrical stimulation. He uses a small hand-held device to check the charge and change the dosage and frequency of the voltage. Batteries should last about five years, and changing the battery requires an outpatient procedure. Once the voltage is adjusted correctly, the patient returns on a yearly basis.

"About 70 percent of the people who have the pacemaker implanted will get some benefit from it," Cloud said. "It doesn't reverse or cure gastroparesis, but the patients have fewer trips to the ER, they vomit less, they start gaining weight and their blood sugar becomes easier to control. They may still have episodes of vomiting, but it's nothing like before."

For Shriver, the Jan. 13 surgery has been successful. She has gained seven pounds and continues to gain weight.

"I'm keeping down almost every solid food I've tried so far, and for me, that's a major difference," she said. "I'm getting better."

She still has to be very careful with what she eats and when she eats. Hard to digest foods such as meat and raw vegetables are off limits, and Cloud has recommended she eat six small meals a day.

"Before, I could go a week without eating because I never got hungry," she said. "I'd faint, and I wouldn't know it was from hunger because my stomach didn't work. Then if I did eat, there was so much pain involved. I knew I was going to throw up and eating wasn't worth it."

Her husband, Tim, a Marine Corps gunnery sergeant based at Cherry Point, her two children, her brother and sisters, and her mother helped as much as they could through the ordeal.

"Dr. Cloud gave me my child back," said Karen Marvin, Shriver's mother. "I thought she was going to die. She got so weak that sometimes all we could do was hold her.

"I know parents who have had to watch their children slowly die of cancer. And that's what this was. We were watching her slowly die. This has just been a miracle."

With each passing day, Shriver is feeling almost normal.

"I'm not afraid to eat, and everything is brand new all over again," she said. "I can sit down and eat dinner with my kids. I'm not going to be throwing up every single day, and my kids don't have to watch me go through that."