“Like a lot of people, I woke up New Year’s Day 2012 with a horrible headache, the difference was, I wasn’t feeling good on New Year’s Eve, wasn’t drinking alcohol and went to bed early.”
Rob Purdie’s Valley Fever journey started with a headache and ended with a lifelong need for specialized medical care to control his Valley Fever. Born and raised in Bakersfield, CA, Rob had heard of Valley Fever, but did not understand how life changing it could be.
Rob’s headaches lead him to a local urgent care where he was diagnosed with a sinus infection and prescribed antibiotics. Two weeks later, the headaches were worse and the antibiotics were gone so Rob sought treatment at another urgent care. “I figured that doctor didn’t know what he was doing so I went somewhere else, but I got the same diagnosis and a different antibiotic.” While still taking his second round of antibiotics Rob made an appointment with a specialist who ordered an X-ray and confirmed that he did not have a sinus infection. His next diagnosis was cluster headaches.
In early February, Rob began to have other symptoms. One evening he began to have double vision and was seen in the emergency department at Kern Medical in Bakersfield, which is now home to the Valley Fever Institute. In addition to the headache and double vision, he had a slight fever (under 100˚F). The first of many lumbar punctures were performed on Rob and he was admitted to the hospital. On Valentine’s Day his doctors confirmed he had Valley Fever that had turned into meningitis. The elevated pressure in his brain from the meningitis was the source of the headaches and vision issues.
Rob was started on an antifungal called fluconazole and received daily lumbar punctures to relieve the pressure on his brain. Eventually a pigtail catheter was inserted in his back so doctors could check his pressure without daily lumbar punctures. The pigtail acted as a temporary port to his lumbar spine. When Rob was finally released from the hospital in March he had lost 70 lbs. and 3 months of his life, and his headache was still there.
In October of 2012 Rob was readmitted to Kern Medical because the medicine that was supposed to be fighting the Valley Fever had quit working and an alternative medicine which was started also failed. Rob began a third medication called voriconazole which was ineffective on its own. A consultation with a neurosurgeon was scheduled so that a port called an Ommaya reservoir could be implanted. The port allows drugs to be administered directly into the ventricle of his brain. The Ommaya is used to administer amphotericin B, (also nicknamed by health care professionals as “ampho-terrible”). While this type of care is very rarely used outside of the Valley Fever Institute, his doctors perform these procedures more than 50 times a month.
Rob was scheduled to start with 2 injections of “ampho” a week which is a drug of last resort because of the potential for kidney damage as well as other severe side effects. It is often compared to the drugs used in chemotherapy treatment of cancer patients. Before a patient is treated with ampho they are given a cocktail of medications to control the side effects the drug often causes. However, as the drug was administered, Rob became almost instantly nauseous as he felt the drug moving down his back and to his abdomen and he became violently ill. Worse than the ampho was the lasting effects of the voriconazole, which Rob was also receiving.
Drugs used to fight Valley Fever belong to a class of drugs called triazoles. The drugs are prescribed at much higher doses to treat Valley Fever compared to other fungal infections. Adding to the issues for patients like Rob, the drugs are not FDA approved and are used off label, so the newer triazoles with less side effects are much harder to get approved by insurance companies. The reported side effects of the drugs as approved by the FDA are amplified at the higher dosage prescribed to Valley Fever patients, and the length of time these patients take the drugs is longer, from 3-6 months for acute uncomplicated cases to a lifetime for patients like Rob.
Voriconazole lists sensitivity to sunlight leading to patients being easily sunburned and amplifying the damage done by sunlight. Anecdotally, while on the medication, Rob wore long sleeves, and long pants as well as a hat even on the 107˚summer days of Bakersfield. The sun sensitivity from the medication led to his first squamous cell skin cancer diagnosis about 2.5 years after he began taking voriconazole. The diagnosis was enough to get him switched to a different medication but the damage was done. Since that initial diagnosis, Rob has had 5 additional diagnoses of squamous cell skin cancer requiring a Mohs procedure to remove. Rob sees a dermatologist regularly to mitigate the damage to his skin and will be seen regularly by his dermatologist for life. He has had numerous chemical peels and other treatments to mitigate the damage and limit his risk of additional skin cancers.
Eventually, the ampho began to affect his mobility. After his treatment, he began to notice that his legs felt heavy and he was struggling to walk at his normal gait. The drug level and frequency of the treatments were reduced to eliminate the side effects. The goal of the doctors at the Valley Fever Institute is to increase the time between treatment of amphotericin as the patient improves. Rob is currently having treatments every 12 weeks.
Since his initial diagnosis in 2012, Rob has had to make a lot of changes in his life. While he misses many of the activities he can no longer participate in, he feels extremely lucky to be able to have the life he has today. “To be able to maintain a normal work schedule and have enough energy to spend time with family and friends is a blessing that I wouldn’t trade for anything.”
One thing that Rob credits for helping him endure Valley Fever is his positive attitude and desire to help other people fighting this illness. Rob’s goal is to raise awareness about Valley Fever and create better support systems for those fighting the disease and their families. “People don’t realize Valley Fever can be a lifelong fight for some of us. I was lucky to have family and friends to support me, but not everyone has that.”
Working with the Valley Fever community and those fighting Valley Fever has given him a new purpose and energy and even brought him full circle to a new career as a patient advocate where he has worked to bring the voices of patients to the health care and research industries.