A Journey of Resilience: Jim Truskey’s Path to Better Health
Known for his high energy, positive attitude and hometown pride for Buffalo, NY (Go Bills!), Jim is no stranger to health battles. He turned 69 last December and is sharing his experience with a rare and serious disease—microscopic polyangiitis (MPA).
His journey began subtly in July 2023. “At the time, I was married to an incredible person and was ready to celebrate being married 50 years that September,” Jim shared. He was also retired. The first sign that something was wrong came during a bike ride with his wife, Patty. Jim felt an unusual fatigue and couldn’t keep pace, something he noted that was very odd for him. Around the same time, he started having random bloody noses.
The fatigue worsened dramatically in August. “I needed two- to three-hour naps, and I never took a nap in my life,” Jim explained. He continued to experience bloody noses, developed an annoying cough, and started losing one to two pounds of weight per week from his usual 160 pounds.
Despite his wife’s concern and urging to call a doctor, the couple had a trip planned to Italy at the end of August. “I told her I would call when we returned,” Jim said.
Upon returning from their trip, Jim’s weight had dropped below 150 pounds. He finally made an appointment, and after bloodwork and a chest x-ray, the situation escalated rapidly.
“On the way home, the doctor called and told me to go to the hospital immediately, that I was extremely sick and my kidneys were failing,” Jim said. He and his wife were “shocked and stunned.” Jim was checked in right away with his kidney function at a dangerously low 22% and his weight at 145 lbs.
The next morning brought a life-altering conversation. Maria Del Castillo, MD, a kidney specialist, informed him of her suspicion. “She told me she believed I had a disease called vasculitis, and that it’s rare and incurable. We were shocked and stunned again.”
Jim vividly remembers his initial reaction to the grim news. “Think for a second that you’re told you have something that is rare and incurable. What’s your first thought? Mine was how long do I have left to live?”
Treatment, Tough Adjustments and Finding the Right Team
However, Jim—a survivor of prostate cancer years earlier—quickly chose a different path. “I decided that I was not going to be the person who works their whole life then retires and dies six months later. I was going to beat this disease!”
Further testing, including a kidney biopsy, confirmed the diagnosis: ANCA-positive MPA vasculitis. Jim credits two “great connections” made in the hospital with enabling his fast start to treatment—Dr. Del Castillo, who became his specialist and a rapid diagnosis.
A week later, his initial follow-up appointment brought another surprise. His blood pressure was normal, which Dr. Del Castillo noted was highly unusual, and he presented with none of the typical rashes. “She checked my heart and lungs, and everything was normal, which she said was very odd and that I was very lucky,” Jim explained.
The treatment protocol involved a heavy dose of steroids and biannual infusions (light chemotherapy) to suppress his immune system. Jim’s wife, who tragically lost a sister to COVID, became his fierce protector. “She became extremely protective of me, making sure I washed my hands, wore a mask when needed and kept anyone who was sick away,” he said. “She is my heart and soul.”
Looking for guidance on his kidney diet, Jim’s wife discovered a valuable resource. “She went on the internet and found the Vasculitis Foundation (VF). They were holding a webinar on kidney disease on what to cook and eat. This was a great connection and an amazing resource for us going forward.”
Jim soon met with rheumatologist Omar Oza, MD, who specialized in vasculitis, another “fantastic connection,” who quickly shifted his treatment. To avoid the “horrible” side effects of the steroids—including severe night sweats, a racing heartbeat, and a head so swollen his wife said he looked “like a pumpkin”—Dr. Oza started him on TAVNEOS ®.
Jim started the steroid taper in November 2023, and it successfully concluded in February 2024. By March, his bloodwork was stable and, crucially, he was ANCA negative. “I had an appointment with Dr. Del Castillo. She greeted us with, ‘Jim, where are you going on vacation? You’re in remission.’ We were finally shocked and stunned in a good way!”
Remission, Gratitude and Looking Ahead
Since that joyous announcement in March 2024, Jim’s blood work has remained stable, his kidney function has improved to around 40%, and he has had no side effects or flare-ups.
Jim and Patty have a son, 49-year-old Chris, and a daughter, 48-year-old Kim. The couple also has two grandchildren, 25-year-old Maddy and 20-year-old CJ. “I have a great support system of family and friends,” he said. “I think this helps me mentally.”
As for advice to others diagnosed with vasculitis, Jim suggests seeing doctors who understand the disease. “I am also extremely fortunate to have two incredible doctors and that I was diagnosed so fast,” he said.
Jim continues to approach life with the same optimism that has carried him through every challenge. “The biggest challenge I have is the infusions every six months—they compromise my immune system,” he explained. “We make adjustments like going to dinner early, staying away from crowds, and wearing a mask on planes. But since remission, my life is pretty much normal. I feel great, I walk three to six miles a day and play golf three times a week when the weather cooperates.”
Earlier in 2025, the biotechnology company, Amgen, selected Jim to serve as an ambassador for TAVNEOS, the medication that helped him reach remission. “I was sent to Chicago to talk about my journey with the disease,” he said.
Jim’s journey has come full circle. Having once celebrated being cancer-free, Jim now proudly says, “I have my life back, and I feel great.” His next goal? “One of my goals is to go back to Chicago and announce I’m vasculitis free!”