"The Vasculitis Foundation Saved My Life."
Victor James has spent his whole life in Stafford, VA. He grew up on a farm, hunting and fishing. He got married to his wife of 42 years as a “youngster,” had children and now two grandchildren. “They’ve added a little pep in my step,” he said. And for 35 years, he was an Allstate insurance agent. That is—until vasculitis.
In April 2012, Victor found himself in the emergency room twice, unable to breathe. But every time, they couldn’t find anything wrong. “I just learned to control my breathing,” he said. But on that last visit to the ER, his wife, Brenda, wouldn’t take no for an answer. “She convinced them to keep me overnight,” he said. “She just wanted to keep me alive.” At that point, Victor could barely walk 10 feet.
The ER doctors referred Victor to an ENT. The ENT put a scope up his nose and looked up his throat. The ENT brought his partner in and, after looking together, they stepped out to discuss Victor’s case. “I knew then that I was in bad shape,” Victor said. When the doctors returned, they said, “We don’t know how you’re breathing; your airway is 100% obstructed.” They told him he needed to be rushed by the rescue squad to the UVA University Hospital in Charlottesville. They gave him a 50-50% chance of surviving, warning him to remain calm because breathing hard could kill him.
“It’s tough when you have to call your kids and say I might not make it,” Victor remembers. By 2am, he had made it to Charlottesville and got an emergency tracheostomy. While in surgery, the doctor suspected vasculitis. They brought in a rheumatologist who confirmed: Victor had granulomatosis with polyangiitis (GPA).
For over a year, Victor was treated with methotrexate and prednisone, but none of it was working. “I was self-employed,” he said. “And still working. But I was so weak that I actually put a recliner in my office to take naps. It’s easy for me to see how other folks in a similar situation could lose their jobs.”
Struggling and on oxygen nearly 100% of the time, he turned to “Dr. Google.” Dr. Google presented him with a 12-month life expectancy. It was a devastating prognosis. That’s when he discovered the Vasculitis Foundation (VF).
The VF was hosting a symposium in Philadelphia in 2013. Not knowing what to expect but desperate for answers, Victor and Brenda signed up. That’s where they met Joyce, the VF’s Executive Director, and Peter Merkel, MD, MPH, the Chief of the Rheumatology Division at Penn Medicine. “We learned so much, it was overload.” But it was Dr. Merkel’s words that changed their lives. “Dr. Merkel told us,” Victor said, “that if you’re not getting what you need, it’s okay to change doctors. I contacted him within a week. I emailed him on a Friday. On Saturday night I got a call from him. I wasn’t even his patient. He spent an hour on the phone with me and my wife. He said, ‘I do clinic on Wednesday. If you can get to Philly by noon, I’ll see you.’ We said, ‘We’ll be there.’”
Dr. Merkel put Victor on a Rituximab clinical trial. Four days after arriving in Philadelphia, he got his first infusion. For Victor, it’s been a “wonder drug.” He’s been in remission ever since.
Today, Dr. Merkel remains Victor’s rheumatologist. “I still drive up there from Virginia,” he said. “It costs me $300-$400/trip. But you can’t put a price on it. He’s worth it.”
“My wife and I both feel the VF saved my life,” Victor said. “It touches deep in my heart.”
The tracheostomy was a big change for Victor. “I’m mostly bald now,” he laughed, “but for two years my wife washed my hair in the sink because water entering the trachea can drown you. I was scared. I still don’t go on boats. It’s affected me a lot.”
But big changes are in the works. Doctors were able to remove Victor’s tracheostomy tube last year. Now he has big ambitions for 2025.
“I plan to learn to Scuba dive,” he said. “It’s a bucket-list item.”
Victor will forever have damage to his right lung, which operates at 50% capacity. “I can’t walk like I used to or go hunting. I used to golf—though I wasn’t very good at it,” he laughed again. But it hasn’t been all bad; the way he views his life has transformed.
“When I was told I had a 50-50 chance of surviving, it changed my perspective. I am blessed every morning I get out of bed; I have to make the most of it.” Despite facing challenges, he and Brenda love to travel. They recently spent a few weeks in Alaska to celebrate their 40th wedding anniversary. “You adapt,” Victor explained. “You don’t give up living. I grew up in a household with my uncle and grandfather. They were both in wheelchairs. They gave me that positive outlook on life: Every day is what we make of it. I try not to wallow in the mud.”
Today, Victor and Brenda are active with the VF. They give, serve on the Board, and help at our symposia. “I don’t have a million dollars to donate. If I did, I would. We all give back what we can,” he says. He believes in sharing what he’s learned with the vasculitis community. When he was diagnosed and Dr. Google told him he had 12 months to live, Victor says, “There wasn’t a lot of good information to turn to. Now, Brenda and I are VF state contacts [to support and connect with those who are newly diagnosed]. I love to be able to share my story with others, to let them know there’s hope.”
He also volunteers to write thank you cards for the VF. In every card he signs, he puts his business card with his personal phone number. He wants anyone who feels alone in this disease to feel comfortable reaching out to him.
“I live,” he said, “by the golden rule: Treat others as you want to be treated.” He remembers those early dark days of his diagnosis and wants to reach out to anyone in the trenches of this disease and encourage them: “Don’t give up.”
Written by Ashley Asti
