By REPORTING ON HEALTH COLLABORATIVE
The 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 lack of government investment to advance research to develop a vaccine.
* Have a valley fever story to share? Write to email@example.com or call (661)748-3142 to leave us a voice message.
In this season of sharing, here is some information on non-profit organizations working to shed light on this overlooked disease:
* The Valley Fever Center for Excellence, based at the University of Arizona, serves the public through research, education and the treatment of this disease. The organization also provides resources and referrals for patients and medical providers at no charge. For more information, visit www.vfce.arizona.edu. You may also leave a message at (520) 626-6517 or e-mail firstname.lastname@example.org.
* The Valley Fever Americas Foundation, based in Bakersfield, supports valley fever vaccine research, as well as disease outreach and awareness efforts. For more information, visit www.valleyfever.com or contact Jessica Einstein, (661)706-8635.
Given Antibiotics First: Sheila Lake, 62, Bakersfield
I had valley fever in 1992 and my husband had it when he was in high school in 1966. When I had it, it was awful. It started when I bent over to pick up my purse at a restaurant. Something caught in my rib cage. I had to put my head between my lap since I couldn't catch my breath. Several days later, I couldn't breathe again and I had back pain.
I went to my regular doctor in Bakersfield who suspected pneumonia and put me on antibiotics. The cough kept developing though, and fatigue kept me from going anywhere. I had a rash over my upper body. I went to the coast for the weekend and had a 102 degree fever on the drive home.
That Monday, I could barely move. I coughed all night long. I went to the doctor, who admitted me to the hospital, where I tested positive for valley fever. I was on anti-fungals for three months. When my husband had it at age 18, he also had extreme fatigue. He couldn't do anything, and missed three months of school. Valley fever is just awful.
Misdiagnosed, Like Many Sufferers: Kathleen W. Zuckerman, 67, Bakersfield
My valley fever story started with a constant cough that I assumed was related to my asthma. But on June 8, 2012, I woke up around 2 a.m. in extreme pain. I had coughed so hard that I bruised several ribs and was having trouble breathing. My husband took me to the emergency room. They diagnosed me with pneumonia and sent me home. I kept getting worse. By the time I finished my antibiotics, I was so sick that I could hardly get out of bed to go to the bathroom. My husband was at work so I called an ambulance and went back to the hospital.
I was admitted around June 15 with pneumonia. When I was admitted, I asked the nurse if I could be tested for valley fever, something my husband had been researching. After two days of not getting better, they called in a specialist who quickly diagnosed me with valley fever. The next eight weeks were spent mostly in bed. My recovery has been extremely slow. I still have a chronic cough and I am a bit short of breath. I tire easily, I've lost 20 pounds, and I have dark circles under my eyes. The valley fever seems to have settled in my muscles, so I am in a lot of pain. So far, this is my story. I hope to feel better soon.
I went to the town hall meeting on valley fever, and it confirmed my concern. People that got really sick were often misdiagnosed. It all comes down to a lack of knowledge and proper training. To me, that is really scary.
Young and Pregnant: Anna Magana, 36, Wasco
I was 16 years old and four months pregnant when I contracted valley fever. It was 1991. I woke up with red welts on my legs and my heels felt like they were on fire. I thought something had bit me. I also had headaches. Doctors initially thought I had meningitis.
Once I was diagnosed with valley fever, I had to receive Amphotericin B three to four times a week. That treatment led to convulsion-like seizures and I had to take Demorol to calm them down. I went through all this while being young and pregnant. I was told that the only other case of a pregnant woman who had valley fever was in Arizona and that the mother died after giving birth. I started freaking out.
My daughter Brianna was born June 21, 1992, three weeks early. They kept us both in the hospital to make sure my treatments hadn't affected her, but, luckily, she had no effects from all the medication I was on. Being so young, I don't think I realized the gravity of my condition; all I knew was that I was very sick. It was a very scary time for me and my family.
Reading those stories of other valley fever cases really touched me and brought back memories. I lived it, and I know what most of them experienced. Hopefully, one day we can find a vaccine to prevent it.
Quick Testing is Key: Brian Renninger, 48, Bakersfield
I am a recent valley fever survivor. I like to think I know exactly how I got it. It was the summer of 2009 when windstorms were kicking up cloud of dusts. At the time of my diagnosis, I smoked. I thought I was just having reoccurring bronchitis that smokers get. But, this time, I coughed so hard I vomited. At that point, I thought, 'Something is definitely wrong.'
My doctor ordered me a cocci test and the chest X-ray showed valley fever-induced pneumonia. They put me on anti-fungals, but it didn't seem to help. A nurse told me my medical team had debated putting me in a medically-induced coma. They ended up increasing the amount of anti-fungal medications. I had to miss three months of work.
More than a year later, I felt better physically but my insides weren't getting any better. The fungus was tunneling into my lungs like a gopher. It was a 2.5-year battle. My doctor suspected I had valley fever right off the bat. I was tested, and I got seen by a specialist quickly. In this valley, in this area, if someone is still sick with flu-like symptoms after a week, they should be tested for valley fever. It's so prevalent here in Kern County. It should be one of those things that's a no-brainer: Just test them.
As a survivor, my suggestion to everyone in Kern is: If you get flu-like symptoms at any time and they don't go away within 7-to-10 days, force your doctor to give you a cocci test.