At 30 years old, Nick Duggan believed he had it all. He was happy, healthy and married with two beautiful daughters. He ran a thriving business in Queensland, Australia with his wife, Allison. They owned their dream home and were financial secure with insurance plans in place in case of emergency. Nothing could have prepared him for what happened next.
In July 2010, Nick visited Allison’s family in California. During vacation, he went quad biking in the San Diego desert. It was this outdoor adventure that changed the course of his entire life. Unbeknownst to Nick, he had contracted Coccidioidomycosis, otherwise known as valley fever.
Valley fever is caused by a fungus found in soil in the southwestern United States and parts of Mexico, Central America and South America. By inhaling these mold-like spores, an individual can become infected with an illness characterized by fever, rash, cough, headaches and joint pain. Doctors are unsure why some exposed to the fungus do not get sick. Cases of those who do, however, vary in severity from flu-like symptoms that last months to the infection spreading to the spine and brain. Nick falls in the latter category.
By the time Nick began experiencing severe chest pains, he was unfortunately back in Australia where medical knowledge on this disease is minimal. His excruciating muscle aches, headaches and fatigue confused the doctors. He also couldn’t sleep. There was no drug that could lessen the horrific pain.
In February 2011, Nick was hospitalized. He would remain inpatient for the next four months. He would also be misdiagnosed three times – pneumonia, bacterial meningitis and lung cancer – before those treating him even speculated that he had valley fever. Valley fever, if caught early, can be treated. Sadly, Nick’s wasn’t. When doctors finally realized he had the disease, it had already spread, making it incurable and extremely difficult to treat.
Without many resources available in his homeland of Australia, Nick found himself fighting an uphill battle. He was losing his hair, his eyes had sunken in and his complexion had turned pasty with a gray tint. He dropped 45 pounds. His doctors were doing everything they could. They monitored his care with frequent lumbar punctures and constantly changed his antifungal medications and dosages. Yet their knowledge and resources were limited, so Nick continued to have relapses and hospital stays.
At home, everything Nick and his family had worked for was gone. He lost his business, had to sell his house to avoid foreclosure, and the insurance plans he had purchased to help in a time of need dropped him when they learned of his illness, citing various loopholes in the policies. After working hard his entire life, doing right to provide for his girls, he relied on food stamps. Once a community fixture, he now needed disability assistance.
At this point Allison sought outside help, pleading for anyone to find a doctor who could save her husband. While Nick was not a US citizen, his wife and daughters were, and they believed moving to the States might be his only hope. With her family in the Bay Area and close to prominent doctors in the field of valley fever, Nick and Allison left Australia for California in December 2011.
He was then connected to an incredible team of doctors at UCSF. His condition is one of the worst ever seen. In Australia, he was the lone survivor of any Aussie to have contracted valley fever. Now in the United States, he became a test case, with the NIH interested in his health progression.
His specialists have him on numerous antifungal, opioid and narcotic medications to ease symptoms and control pain. Yet taking these life-saving drugs comes at a price. A typical regimen for individuals needing the antifungal agent, Fluconazole, is 400mg; Nick needs 1,200mg every day. The side effects are brutal: hair loss, dehydration, weak skin and nails and internal organ stress. His doctors have informed him that his organs look like those of an 85-year-old. Additionally, the drugs caused gangrene in his gallbladder and diverticulitis.
He has also had adverse reactions to his pain medications, such as opioid induced constipation (OIC). For Nick, it was initially embarrassing to discuss this issue with his doctors. He found it uncomfortable to explain how long he would need to stay in the bathroom only to finish and see a red bowl. Luckily, Allison encouraged him to be honest with those treating him. If he wouldn’t mention it in appointments, she would. Now his pain specialist swaps medications often to offset as many negative reactions as possible.
A new challenge for Nick regarding his medication is being able to obtain it. With new pharmacy guidelines to deter drug abuse, Nick has faced skepticism picking up his prescriptions. Once he was even refused the medications needed for his survival. While a few days to resolve this issue may not seem like a big deal, for someone as sick as Nick, a couple of days without medication can be life-threatening. While he was able to manage most of his symptoms with additional medications he already took, this incident made him fearful of what could have been. What if he couldn’t receive these needed medications quickly enough? What would happen to him? It also made him more aware of the fact that those living with pain need to speak up and advocate for proper pain care and rights.
Yet despite the phenomenal care Nick receives from his new team of providers, he continues to suffer severe episodes, one of which nearly took his life in 2012. For four weeks, Nick lay in a hospital bed clinging to life. He suffered a very serious and rare spinal cord infection while the valley fever spread to his spine, brain, bones and muscles. With blockage of the spinal fluid, Nick found himself paralyzed for a three-day period. His parents flew over from Australia to be at his side as doctors informed him that they were unsure he would recover. Miraculously, the steroid injections worked and he slowly improved.
It is still a daily battle for Nick, as the pain never ceases and the fatigue is debilitating. To have been so active only to now collapse from exhaustion if he misses a meal is depressing. Although his depleted energy is a symptom of valley fever, he feels others who do not know him perceive him as “lazy.” In fact, many living with valley fever face that same criticism and judgment.
“If only people could separate the person from the disease. Nick, the person, is not grumpy, tired or lazy – it is the disease of valley fever that is making me unable to function.”
He wishes there was more public awareness, compassion and education regarding valley fever. With so many invisible aspects to the disease, including no tangible or visual signs, the majority of Americans are unaware of this condition or the need for swift action. This also pertains to the medical profession. Since valley fever presents itself like many other common respiratory conditions, doctors overlook it. The delay in diagnosis and treatment due to a lack of training and attention in the medical community is why Nick is so ill today.
In the past decade, the number of valley fever cases has risen by 900 percent. Yet because it is not a high-profile disease, funding is scarce. Nick’s mission is to change this. His goal is to use his voice to advocate for more research and help. “With 20,000 new cases each year, and another suspected 150,000 going undiagnosed, valley fever deserves more attention. We need a vaccine and we need better treatments. Valley fever is not going away, and the public deserves more information and better ways to protect themselves against it. We need hope and help.”
As Nick moves forward, managing the pain and progression of his disease, he gains strength from others living with valley fever. It is a community unlike any other, where every person understands his feelings, symptoms and frustrations. Nick has found comfort connecting with others via the site Valley Fever Survivor (www.valleyfeversurvivor.com/). It has become a great resource where he can meet others and share experiences. He knows the pain that comes from people looking at you but not seeing what is doing on, so this group is helpful for him. Together, they push each other forward.
The greatest source of encouragement comes from his incredible family and friends. His wife, Allison, is his everything. They are an even stronger team now than they ever were before valley fever. His beautiful girls are his light and inspiration, and he recognizes he is lucky to have such a supportive group of friends and family. They have carried him through the most trying times.
Today, Nick focuses his attention on finding that daily glimmer of hope on which he can hang his hat. He follows an organic, non-processed, mostly-raw diet. Not only does this nutritional plan give him more energy, it also helps him rid his body of toxins from his medications. For him, it is about balance. Just as he needs medications to survive, he also relies on nature and complementary therapies to nurture his spirit.
Nick is full of life. Despite the obstacles and suffering he endures, he cherishes life. He loves waking up each morning, feeling the wind and being with his girls. No matter what, Nick will continue to live as normal a life as possible, with gratitude and hope.
“If I accepted what I had been told about my health, I would not be here today. What I have learned through this journey is that we, the patient, have to become the heroes in our own lives. We have to fight the fight while still clinging to hope. Never give up. I’m not.”
Valley Fever Survivor – http://www.valleyfeversurvivor.com
CDC – http://www.cdc.gov/features/valleyfever/
For more information about Nick Duggan – http://www.millionto1.org