When Joe Schniers arrived back in Hot Springs after several weeks in the hospital, he found posters hung up at his home that were made by Hot Springs School District students.
By Marcus Heerdt
HOT SPRINGS – On Sept. 29, 2022, Hot Springs School District (HSSD) Technology Coordinator Joe Schniers was admitted to the hospital. He returned home 62 days later, but only after an initial misdiagnosis, nine spinal taps, a life flight via helicopter to Colorado, and the eventual diagnosis and treatment of a rare autoimmune disease. Joe, who is in his second year of working at HSSD, resumed his technology duties at the school, both remotely and in person, on Dec. 5.
“At the end of September, I started having flu-like symptoms and it progressed into pretty high fevers,” Joe said during a visit to his home on Friday, Jan. 6. “That’s when I knew it was time to go to the hospital.”
Joe, a retired and disabled Air Force veteran, was first admitted to the VA Hospital in Hot Springs, who then on Oct. 1, transferred him via ambulance to Monument Health Rapid City Hospital.
“They thought he had cryptococcus meningitis and treated him as such,” said Jacquie Schniers, Joe’s wife of 24 years who also works at HSSD as the Special Services Director.
At the hospital in Rapid City, Joe initially tested positive for this strain of meningitis, which is a fungal, not a bacterial, infection. However, the aggressive treatment only made his condition worse and it turned out that his test results were inaccurate.
“What was actually happening during that time period was that fatty tissues took over areas of my spine and brain, pressing up against my nerves so that my brain could not communicate with the rest of my body,” Joe said. “I was hallucinating, lost feeling from my waist down, and had no motor skills. I could not control what was happening.”
Three weeks into Joe’s treatment, Monument Health doctors called Jacquie while she was at work and told her to prepare herself because they did not believe Joe would make it through the night. That is when Jacquie knew something had to change.
“Jacquie saved my life during this whole thing,” Joe explained. “She is a strong, intelligent woman and advocated for me to go to a different hospital.”
“For me, every day was frustrating,” Jacquie said. “He wasn’t getting any better until we finally figured out what was wrong with him. It was difficult watching him get worse and he lost a total of 32 pounds. It was scary. At one point his C4 optic nerve in his left eye became loose and his eyeball was just floating around and spinning uncontrollably in its socket.”
On Oct. 20, Joe was life-flighted via helicopter to the oncology ward at Poudre Valley Hospital in Fort Collins, Colo., because his physicians deduced that he may have terminal brain cancer.
Just before his transfer to Colorado, a final spinal tap was conducted and sent to the Mayo Clinic in Rochester, Minn. It was the Mayo Clinic who ultimately discovered his true illness.
Meanwhile, realizing that he did not have brain cancer, Joe was transferred to his fourth and final hospital on Oct 23., UCHealth’s (University of Colorado) Anschutz Medical Campus in Aurora, Colo.
On Nov. 3, five weeks after his initial hospitalization, Joe was correctly diagnosed with autoimmune glial fibrillary acidic protein (GFAP) disease. What causes GFAP is currently unknown within the medical field, and the “novel” autoimmune disease was only first written about in 2016 by researchers at the Mayo Clinic. When stricken with the disorder, the patient’s immune system erroneously attacks the glial proteins of the central nervous system, leading to a wide variety of problems.
“The doctors in Colorado knew how to treat GFAP, and immediately hooked me up to an IV bag full of steroids,” Joe said. “Already the next day I started coming around. I woke up, was coherent, and was eventually able to move my legs. I even provided occasional virtual technology assistance to the school.”
After his first course of treatment, Joe went through rehab for two and a half weeks and worked on exercises for both the body and the mind.
The Schniers said that through the entire ordeal, family, friends, the Hot Springs community, as well as HSSD’s administration, staff, and students were very supportive.
“I am honored to have been shown so much support from the students and staff at HSSD,” Joe said. “I received hundreds of cards from the school and my family hung them all up in my hospital room. The amount of support I received gave me motivation and I was able to stay focused.”
“We really felt at home with the support of the school district through all of this,” Jacquie added.
The support continued when Joe returned home.
On Nov. 28, Joe was able to leave the hospital in Colorado alongside Jacquie, their son Oscar, and their two daughters Kiley and Kaiya.
“When I came home, Elementary Principal Abby Karn had hung up posters in our house that were made by students,” Joe said. “Some school staff members also provided us with meals for two weeks, and some even offered monetary donations.”
Although now at home, the Schniers know that the battle is not over yet, and they are still unsure how Joe was stricken with GFAP in the first place.
Each week, one nurse and two physical therapists from the VA visit Joe at home to track his progress, check his vitals, and help him improve his motor skills and memory issues.
Joe often wonders if something from his 22 years of military service contributed to his current GFAP disease. Both he and Jacquie spent a total of 14 years overseas, and Joe said that he has lived in places with poor air quality, been around burn pits, and experienced psychological distress.
“We caught the GFAP relatively early but it still caused damage,” Joe said. “It was rough but it’s still not over. It’s getting better, but not over.”
Every six months, Joe must travel back to Colorado for an intravenous rituximab infusion, which is a monoclonal antibody medication designed to fight his condition. He may also have to take the steroid medication prednisone for the rest of his life.
“My motor skills are still not all there,” Joe explained. “Right now I cannot leave the house on my own, I can’t fully walk, and I can’t drive. I have a walker and a wheelchair. Although the disease has subsided, I could be like this forever. I am hoping to get better but at this time, my doctors don’t know what my future will look like.”
“My biggest fear in all of this is: ‘When will it happen again?’ and ‘When will it come back?’” said Jacquie. “We hope it never does.”
“The doctors and the VA are helping us live life with this condition by giving us the resources we need to manage it,” Joe said.
“I’ve heard the saying that ‘life changes on a dime’ but I’ve never understood it until now,” Jacquie said. “We still have a long journey ahead and there is a lot that we don’t know, but we will work through it together, it’s what we do.”