Joseph Coates' Fight Against POEMS Syndrome: A Life-Saving Treatment Journey

Just over a year ago, Joseph Coates faced a harrowing decision: would he prefer to die at home or in the hospital? At that time, Coates was 37 and residing in Renton, Wash. , barely conscious after months of struggling with POEMS syndrome, a rare blood disorder. This illness had resulted in numbness in his hands and feet, an enlarged heart, and kidney failure. Regularly, doctors had to drain liters of fluid from his abdomen. His condition had deteriorated to the point where he was no longer eligible for a stem cell transplant, one of the few treatments that could have potentially brought him into remission. “I had given up, ” he shared.
“I believed the end was unavoidable. ” However, Coates’s girlfriend, Tara Theobald, was determined not to let him give up. She reached out via email, pleading for assistance from a doctor in Philadelphia named David Fajgenbaum, whom they had met at a rare disease summit the previous year. By the following morning, Dr. Fajgenbaum responded with a proposal: a novel combination of chemotherapy, immunotherapy, and steroids, which had not been tested before as a treatment for Coates’s condition.
Brief news summary
A little over a year ago, Joseph Coates, then 37 and living in Renton, Washington, faced a critical decision: die at home or in the hospital. He had been battling POEMS syndrome, a rare blood disorder, which left him with severe symptoms, including numbness in his extremities, an enlarged heart, and failing kidneys. With his condition deteriorating rapidly, he was deemed too ill for a potentially life-saving stem cell transplant. Feeling hopeless, Coates resigned himself to the idea of death. However, his girlfriend, Tara Theobald, refused to give up on him. She reached out to Dr. David Fajgenbaum, a physician in Philadelphia they had met at a rare disease summit. To their relief, Dr. Fajgenbaum responded by proposing an unconventional treatment approach that combined chemotherapy, immunotherapy, and steroids—options never before tested for Coates's condition. This innovative suggestion sparked a glimmer of hope in their desperate situation.
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