John DeWeese

| Sean Kotz

Special to The Roanoke Times

John DeWeese of Shawsville was in Boone, N.C., in mid-March to support his son, Shane, who was competing in a basketball tournament.

Despite the fact that he had been battling increasing joint pain and vicious symptoms of a viral infection, the 38-year-old DeWeese was where he wanted to be.

But on March 14, DeWeese took a sudden and dramatic turn for the worse, coughing up blood and having severe respiratory problems.

DeWeese's wife, Lisa, rushed him to the emergency room at a Boone hospital, where he was stabilized, but something was very wrong.

"They told us if they did not transfer him to a larger hospital immediately, he would die," Lisa said.

DeWeese had gone into kidney failure, his lungs had filled with blood and he was battling for his life, but at least they had a name for the disease: Wegener's granulomatosis.

According to the Vasculitis Foundation, it's is a rare immune system disorder affecting approximately one in every 20,000 to 30,000 people.

It affects the upper (sinuses and nose) and lower (lungs) respiratory system and frequently involves the kidneys, eyes, ears, throat, skin and other body organs, according to the VF Web site.

There is no known cause, it is not contagious and tends to strike Caucasians between 40 and 60 years old with devastating consequences.

DeWeese and his family were at Wake Forest University Baptist Medical Center for two days before he was transferred to Carilion Roanoke Memorial Hospital, where he would spend most of the next five months, not including one month at the University of Virginia Medical Center for specialized treatment.

The condition was so rare that Lisa DeWeese, a licensed practical nurse for 20 years who was on the threshold of receiving her registered nurse designation when this happened, had never heard of it.

However, she educated herself quickly on both the disease and the treatment, which has its own set of severe complications.

"He received insulin and very high doses of steroids ... along with chemotherapy," said Lisa DeWeese.

"This destroys the normal tissue in our bodies and one of the complications is, he ended up with several holes in his bowels."

A procedure was done to waylay the effects, but it will be perhaps a year before his condition allows for that to be repaired surgically.

In the meantime, Lisa DeWeese's mother, Judy Shaver, has had to move into the couple's Shawsville house to help take care of the DeWeese children, Shane, 13, and Danielle, 17, while also taking care of her husband, whose diabetes required a recent amputation below the knee.

"It's just been awful for everyone to go through," said Shaver, who said that by May, the medical bills had already topped $700,000.

However, she points out, "John has always been such a happy, positive person and that really helps. We are amazed at his progress."

Progress, in this case, means being able to stand for nearly a minute with support, or lifting his arms unaided. But they are thankful to see it.

Shaver and her daughter want people to take the time to look up the disease and become familiar with it so they can recognize symptoms early.

They also want people to know how much they have appreciated the community support.

One important contribution has come from John DeWeese's best friend, Bob Hopkins.

Soon after DeWeese's condition developed, Hopkins decided to start a blog, johndeweese.blogspot.com, to keep people updated on John's progress.

It seemed a fitting gesture.

For more than two decades, the pair loved to play pranks on each other and have been practically inseparable, spending much of their time fishing.

"With his whole illness, feeling like I want to go fishing is difficult," Hopkins said.

The blog has been very important for DeWeese's friends and family and enables them not only to get updates on his condition but to be reminded of his perseverance and determination.

"He's a very inspirational person," Hopkins said. "Everybody who knows him knows that."

The blog also includes a PayPal donation button that allows visitors to help cover the incredible medical costs associated with nearly half a year of constant medical attention.

"John had the main income so his wife could go back to school and get her degree," Hopkins said.

"I just don't think people honestly realize how tough that is. On top of not having an income, now you have to travel and make sure you get the right care."

But perhaps equally important is the fact that the blog has been able to bring more good news.

John DeWeese, after meeting every goal and milestone set before him, was finally able to move out of Roanoke Memorial on Aug. 10 and into Carilion's rehab center.

Randal Shaver, Lisa's DeWeese's brother, is also planning a benefit event that is slated for Sept. 27 in Shawsville at the middle school football field.

There will be eight bands, food, kids games, silent auction, door prizes and a Harley Poker run, according to Randal Shaver.