Karen Werts, 53, Bakersfield
My journey with valley fever began in August 2010. While at work at a local medical center, I felt heaviness in my chest and my right arm ached. My boss sent me to urgent care to make sure I was not having a heart attack. The EKG was normal, but a chest X-ray showed a slight shadow in my right lung. The physician said I probably had the start of bronchitis, and prescribed antibiotics. The heavy feeling in my chest never went away and my legs began to swell.
One month later, I awoke in the middle of the night with chills. Later that night, I woke up again, soaking wet. I figured I was coming down with the flu, so I stayed home from work that day.
The next night, I had the same symptoms again, only this time I could not breathe in without a sharp pain on my right side. I went to the ER.
Based on an X-ray, I was told I had pneumonia in my right lung. I was hooked up to an IV, and when it was done I was sent home with more antibiotics. I was not tested for valley fever. The next morning, I had a new symptom: I was covered in welts.
I went back to the ER. I was very disturbed because the ER physician came into my exam room, stated that the radiologist saw a mass on my X-ray from the day before, and wanted to do a CT scan. So down to CT I went. When the results came back, the diagnosis was that I still had pneumonia, and nothing else, and that I had an allergic reaction to the antibiotic.
At this point, still NO ONE had done a valley fever test, and new symptoms were starting to appear. Painful, angry, red bumps the size of quarters began appearing on my legs and torso, and my feet and legs were swelling uncomfortably. I had unbelievable fatigue, and it was painful to breathe.
I went to my primary care physician for a follow-up, and she asked if anyone had done a valley fever test. She did one! I was diagnosed with valley fever on Oct. 28, 2010, two months after my symptoms began. I know I was luckier than most. My valley fever remained very active for 17 months.
The valley fever symptoms were bad, and I also had two bouts of pneumonia and the night chills and sweats continued. But I was placed on the highest dosage allowed of Diflucan, and I would compare the side effects of this anti-fungal medication to chemotherapy. I lost my eyelashes, eyebrows and most of my hair, and had sores in my nose and mouth. I had severely cracked and bleeding lips, and joint pain that made moving unpleasant. I was so fatigued that even getting up to use the bathroom was a huge effort. I also had to undergo constant blood tests to check my liver function, due to the Diflucan.
My valley fever finally went inactive in January 2012. But I always have this nagging fear in the back of my mind that it will resurface. I scrutinize every spot on my legs, and when I feel really fatigued, I pray that it isn’t starting up again. I have hip joint damage from the disease and the medication. If the disease reactivates, I fear the medication won’t be effective this time.
I have lost two years of my life to valley fever and now live with these constant fears in the back of my mind. I would not wish this for anyone, even my worst enemy.
Reporting on Health Collaborative asked readers to share their experiences with valley fever. Here are their stories, in their own words, as told to the Collaborative's Community Engagement Editor, Kellie Schmitt. Their accounts capture the pain and anguish suffered by local families as doctors struggled to find the right treatment and jobs and lives were lost to the disease. Misdiagnosis was a frequent problem, allowing time for the disease to "tunnel" its way into lungs and other organs, as one survivor put it. And, even when the correct treatment was administered, patients often suffered terrible side effects. These first-person stories are a poignant reminder of the need for better treatment protocols and improved diagnosis. They also highlight the costs to families, employers and the government of underinvestment in research to develop a vaccine. Do you have a valley fever story to share? Write firstname.lastname@example.org or call (661) 748-3142 to leave us a voice message.