Former CIA Analyst’s Diagnosis Journey Captures Attention

Randolph H. Pherson’s journey through the complexities of the healthcare system has been a rollercoaster of uncertainty. A former CIA analyst, Pherson had a harrowing experience with coronary artery disease that led him to channel his intelligence-gathering skills into understanding medical care.

His own medical odyssey, however, proved to be a challenging puzzle. It took years, numerous doctor visits, and a trip to the emergency room before he received the diagnosis that would save his life. In 2014, Pherson underwent quadruple bypass surgery after years of struggling with undiagnosed heart issues. Shortly after the surgery, he developed a baffling array of symptoms, including painful skin rashes, fevers, and abnormal blood counts.

Over the next seven years, he consulted multiple specialists who ruled out 50 different diseases but couldn’t pinpoint the cause of his suffering. Then, in September 2021, during a vacation in Reykjavik, Iceland, Pherson’s health took a critical turn. A fortuitous series of events led to the identification of the unusual ailment that had plagued him for years.

Pherson believes he might still be searching for answers had he not been cared for by a team of medical professionals with a comprehensive approach and connections to experts at the National Institutes of Health. This collaboration ultimately resulted in a definitive diagnosis in February 2022. 

Pherson, now 74, continues to travel frequently as a national security consultant. He receives medical care from doctors near his home in Northern Virginia and at the NIH to manage his complicated and unpredictable illness. The ordeal began in 2009 when Pherson, an avid runner, started experiencing intermittent shortness of breath.

Initially, doctors assured him that his heart was healthy, partly based on a nuclear stress test’s result. They then shifted their focus to his lungs, diagnosing him with asthma. Pherson went through a dozen medications and consulted numerous doctors, mainly allergists, but the breathlessness persisted. 

It wasn’t until Pherson’s primary care physician advised him to go to the emergency room after he struggled to walk a block that the true problem was discovered – blockages in four coronary arteries. After urgent quadruple bypass surgery, Pherson learned he had been misdiagnosed years earlier.

A rare condition called balanced ischemia had caused multiple arteries to be equally affected, leading to a false negative on the stress test. Pherson’s arteries were found to have blockages ranging from 80 to 90 percent. 

Just two weeks after the bypass surgery, Pherson developed an intensely itchy rash on his lower legs, which would periodically reoccur but only on his legs. Eventually, this rash transformed into painful, coin-sized red spots that erupted all over his body, sometimes lasting for weeks. 

By 2021, Pherson was facing new symptoms: periodic fevers, chills, and episodic joint pain. At times, it was challenging for doctors to determine whether these symptoms were reactions to his medications or signs of an unidentified disease. Blood tests consistently indicated that something serious was amiss. He was anemic, and his white blood cell count was elevated, at times shooting to 10 times above normal, a condition known as hyper eosinophilia.

Pherson consulted a multitude of specialists and underwent various tests, including allergists, a dermatologist, gastroenterologist, otolaryngologist, rheumatologist, oncologist, and a “wellness” practitioner. An incidental pancreatic cyst was discovered but considered benign, although it required regular monitoring for potential malignancy. 

Pherson’s recommended strategies from his book, “How to Get the Right Diagnosis: 16 Tips for Navigating the Medical System,” seemed to be less effective in his own case. He found that the focus appeared to be primarily on prescribing medications rather than taking a holistic approach to his condition. The specialists he consulted were experts in their fields but often failed to communicate effectively with each other or with Pherson himself. 

Despite his health struggles, Pherson remained busy with his work as a national security consultant. However, in September 2021, as he was about to embark on a long-awaited vacation to Iceland with his wife and friends, his increasing shortness of breath gave him pause.

He saw two specialists who were supposed to assess whether he should go on the trip, but they failed to get back to him.

Frustrated, he decided to go ahead with the vacation, reasoning that Iceland had medical facilities if needed. The trip proved to be a turning point in his health crisis. He struggled with fevers, a painful, swollen hand, and worsening breathlessness. Eventually, he sought treatment at a hospital in Reykjavik, where he was seen by a rheumatologist and a cardiologist.

They quickly admitted him, and a series of tests revealed pericarditis, right-sided heart failure, a blood clot in his lung, chronic anemia, and painful sores on his hands and ankles. He underwent blood transfusions and was diagnosed with a form of vasculitis, a group of rare diseases that cause inflammation of the blood vessels. 

Reference  

Washington post, “Medical Mysteries: He’s lucky his Iceland vacation ended in a hospital” https://www.washingtonpost.com/wellness/2023/09/09/fevers-swelling-breathlessness-medical-mystery/.