I THOUGHT I HAD PNEUMONIA.
It was October 2009, and I had recently returned from a weekend visit to San Francisco with my wife and son. Fall is a great time to visit the city, but it is unfortunately also the start of cold and flu season, and when I started coming down with a sore throat and body aches that eventually progressed to a high fever, chills and a cough, I chalked it up being out in public exposed to whatever wandering viruses may have been present that day. When the cough worsened a few days later, I decided to go see my doctor at Kaiser’s Delta Fair clinic in Antioch.
The doctor said I had all the symptoms of pneumonia. He prescribed me some meds and sent me on my way to hopefully mend.
But mend, I didn’t. In fact, over the next two weeks I started feeling much worse. The fever and chills persisted, as did the cough. I was having difficulty breathing. Finally, on the Saturday morning of Halloween, I felt so rotten that I literally thought I might die. I went into our backyard to take advantage of the warmth of a gorgeous autumn day as I phoned the advice nurse to describe my symptoms. I was given an appointment at the acute care clinic at Kaiser Deer Valley Medical Center.
The doctor examined me and made me blow into a spirometer to check my lung capacity. It came back around 80%. The next thing I knew, I was in a wheelchair heading to the emergency room. They laid me down, hooked me up to monitoring equipment, and started pumping me full of saline solution to counteract my extreme dehydration. Better get comfy, I was told, because I wouldn’t be going home to hand out candy for the trick-or-treaters that night.
‘You have a disease!’
It was the middle of the H1N1 pandemic, also known as swine flu. The hospital was taking all precautions, and as they had no idea what I was ailing from, they placed me in a full isolation unit where, cut off from contact with my family, they hooked me up to a Christmas tree of IV bags with a variety of toxic drugs intended to retard the progression of my illness if not heal me. While I still felt like crap, getting the saline solution when I was admitted helped tremendously. At least I no longer felt like I was at death’s door.
But my doctors were very concerned. I was 44 years old. Too young to be so ill. A chest x-ray revealed a suspicious spot on my right lung. They speculated that I might have lung cancer, even though I never smoked and was otherwise healthy. They ordered a lung biopsy and kept me in the hospital while they sent out to the lab and waited for the test results. The idea was that they would start me on chemotherapy the moment they got confirmation of the diagnosis.
Those were some agonizing days for me and my family. Now out of the isolation ward and in my own private hospital room, my wife came to visit me during the afternoon while at night I sat up awake and wondered what would happen when they delivered the dreaded news.
Then one afternoon while my wife was visiting, my doctor burst into the room with a big smile. “I have wonderful news — you have a disease!”
This didn’t exactly fit my definition of wonderful news until he explained that I didn’t have cancer, but rather something called Valley fever, or coccidioidomycosis, a fungal infection caused by windblown spores that get into the respiratory system and in rare cases can cause extensive damage, including death. The good news was that they had caught it before it disseminated to other parts of my body. The bad news was that they only caught it by chance.
See, Valley fever is uncommon in the Bay Area. So uncommon, that doctors here don’t generally look for it. The spores are most prevalent in hot, arid regions of the Central Valley and Southwest. The infectious disease specialist that soon took up my case asked me if I had recently been to any of those areas. I hadn’t. And because I wasn’t Black or Hispanic — two groups that are statistically more susceptible to contracting Valley fever — nor did I work on a farm or in construction, I didn’t fit the profile of someone who should have become sick from the disease.
But cocci spores have been known to travel up to 200 miles, and being in Oakley on the western outskirts of the San Joaquin Valley meant that I could have picked them up anywhere — perhaps from fill dirt brought into town from the Valley. Perhaps from gardening in my own yard. It was anyone’s guess, and to this day I’m sure I’ll never know. If I lived in Fresno and had suddenly taken ill with similar symptoms, the doctors there would have probably tested me first for Valley fever, instead of spending a week trying to determine what I had. Or so I was told.
Double the dose
Now that my doctors knew exactly what I had, they got right to work treating me. As part of my drug cocktail I had been receiving all along, they had been dosing me with Amphotericin B, a potent fungicide designed to knock out a number of nasties including coccidioidomycosis. My specialist now switched me to fluconazole, which I was told to take at nearly double the normal dose while they drew my blood each day to see if my titer numbers were coming down into normal range. Anything less than 2 was considered good, and my number was far above that.
They kept me in the hospital for weeks while they continued to monitor me, much to the chagrin of the risk management team that was as anxious to have me go home as I was to be there. On Nov. 24, two days before Thanksgiving, I got my discharge papers and rode back to Oakley with my wife while Kenny Chesney and Dave Matthews sang “I’m Alive” on the radio. I felt like I had just been paroled from prison. The bill for my hospital visit came to $164,000, of which all but $3,000 was covered by insurance.
But my battle with Valley fever wasn’t over just yet. For the next few months I remained on the fluconazole and attended regular appointments with my specialist to assess my progress. I lost a lot of weight. I dropped to 138 pounds at my low point in January and was so gaunt that I resembled a POW after being liberated from a hard labor camp. I lost so much muscle mass that I couldn’t move my arms without severe pain. I had to go to physical therapy to regain my lost mobility. But the drugs were working. By July of 2010 my titer numbers were close to normal and my doctor reduced the fluconazole until eventually we stopped it altogether.
After nearly 16 years, I am happy to say that my Valley fever has not returned. But my life has been altered. The crumbly part of my lung that was removed was relatively small, but I still have occasional shortness of breath because of it. I consider it a small price to pay when I think of others who have lost limbs or lives because of the disease. I am grateful to my care team for having diagnosed me when they did. I hope that others never have to experience this first hand, but if you have flu-like symptoms that won’t go away, be sure to have your doctor test you for Valley fever. It could save your life.
Glenn Gehlke is a web producer for Local News Matters.