Suffering, Misdiagnosis and Pain: Community Members Share Their Valley Fever Stories
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 government of underinvestment in research to develop a vaccine.
1. Young and Pregnant: Anna Magaña, 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.
2. Never Thought I Would Catch “the Fever:” Andrea Rivera, 34, Delano.
I've lived in the valley my whole life and, until 2009, I never thought that I would catch "the fever." I had just had my second child, who was five weeks old. I started to develop welts on my legs, my feet were swollen and I could not bend my right leg below the knee. I also had a low-grade fever. I went to urgent care where they gave me a shot of an antibiotic and prescribed me a very strong form of another antibiotic. Two days after my urgent care visit, my feet became so swollen that I could barely walk, plus I developed a 101 temperature. My mom convinced me to see her primary care physician in Delano. The moment he walked into my room and looked at my legs, he said I had valley fever. I could not believe it. I thought valley fever consisted of fatigue, shortness of breath, pneumonia, coughing, and fever. Now I know those welts were also an indication. He put me on the anti-fungal Diflucan and said I was very lucky it was caught before it developed into something more serious. I was on Diflucan for six months. Now, three years later, I'm symptom free, but I understand I will always have the disease in my body. I pray my immune system is never compromised. It breaks my heart to hear of those who did not survive the fever or of those who have had lasting effects because of it. I think physicians need to know all symptoms and side effects of this disease, and need to test for this disease immediately.
3. Given Antibiotics First: Sheila Lake, Bakersfield, 62
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.
4. Misdiagnosed, Like Many Sufferers: Kathleen W. Zuckerman, Bakersfield, 67
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.
5. Quick Testing is Key: Brian Renninger, Bakersfield, 48
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.
6. Told She Had Scarlet Fever: Edna Wayne, 80, Bakersfield.
I was about eight years old and it was the first day of school. The nurse inspected us and decided I had scarlet fever. They took me to Kern General Hospital and put me in isolation on the fifth floor.
I spent three months in isolation; my mother didn’t even get to see me. She thought the doctors knew what they were doing. I was weak, but I wasn’t that sick. I got to come home for Thanksgiving.
Most people never heard of valley fever in those days. People didn’t understand. The reason I found out that’s what I had was in Sacramento years later. I went to a clinic there for what turned out to be a valley fever flare-up. My whole body ached.
They asked me: When did you have valley fever? I told them that I’ve never had it. They said yes you have. They just misdiagnosed you. Then, I explained how I was hospitalized as a child. They said, yes that was probably valley fever.
7. Doctors Refused to Test for Valley Fever: Colette Kitlas, 54, Davis
I got valley fever in Davis, Calif., in October 1999. At that time, many doctors in the area didn’t seem to know about it at all; they just thought it was something down in Arizona that didn’t exist here. But I didn’t travel to any other parts of the valley; I contracted the illness right here in Davis. I’m not sure how I got it, but I live behind a dirt track, I work in the garden and there’s a lot of agriculture.
The disease hit me first with respiratory symptoms. The glands in my neck swelled so large it was like I no longer had a neck. That put pressure on the inner ear so I experienced severe vertigo. I went to the emergency room, and they said I had an inner ear virus. I was so weak that I could barely get out of bed to the bathroom. I was in and out of doctors’ offices. I was diagnosed as having asthma, influenza, a viral infection. I never had a fever, though. I was pretty much bed ridden for four months. I experienced dizziness and extreme fatigue. I felt as if I was having an asthma attack yet I could still breathe.
It impacted my family, too. I could not get involved with my teenage son; I couldn’t even cook meals -- I was too weak. After about a year, a friend of my husband’s said his wife, who lived in Sacramento had something called valley fever. I did all kinds of reading and research. I called the Center for Valley Fever in Arizona. A doctor got on the phone with me and talked to me for an hour and a half, asking me all kinds of questions over the phone. He said: ‘You sound like you definitely have valley fever.’
He gave me information on valley fever testing, but my doctor said it was ridiculous. So I got ignored. Eventually, though, I got tested and diagnosed, and I did have valley fever. It took me 2.5 years to completely recover from all that. It was scary: I thought I was going crazy. Doctors thought I was exaggerating my symptoms. After I finally recovered, I kept telling people: I hope you never get this. I would never wish this for anyone.
Hopefully, some day many more doctors will be informed of valley fever and its seriousness. In this way, maybe others will not have to suffer needlessly.
8. An Infant Suffers and Survives: Tyler Thomas, 7, as told by his mother, Sonya Hodge, Bakersfield, 44
Just months after my son Tyler Thomas was born, we noticed a knot on the right side of his head that felt like hard bone. The doctor kept saying it was a calcium deposit. But when he started having night sweats and had frequent colds, we had a feeling something more was wrong. He also developed what looked like boils on his pelvic area and leg. I took him to a different doctor.
When he was about a year old, his eye swelled up as if someone had hit him or he had fallen. The doctors sent us to UCLA where they did a biopsy. They realized he had disseminated valley fever. The valley fever had spread to his skull, and he had what’s called cranial osteomyelitis. From that point on, we never even spent a full month at home.
Tyler received the anti-fungal medication amphotericin B. It was so harsh when they first gave it to him that he had a seizure and a fever. It was terrifying. I didn’t know what was going on with my son.
Back at home, I had to administer IV medications without nursing skills. Once, when I was administering the medication, the Amphotericin was too strong, and it looked like he was paralyzed from the neck down. He kept crying. I rushed him to a local hospital where I was told he had to be immediately transferred to UCLA. There, they realized the amphotericin had stripped him of his body’s nutrients.
Amphotericin also blows patients’ veins. With so many different IVs, his little hands and legs were all swollen. It came to the point where I picked up my son and looked at him. He was so swollen and torn up. I thought, “They don’t have a cure. Was it worth him going through the pain and misery?” You could see it in his eyes. I was so upset once that the nurses hid him from me when they had to put in another IV. I didn’t want them to poke him anymore. But every day counts. They can’t give you a break.
Tyler went through this for a year and a half. They finally got the valley fever to a level where it could be suppressed. But it never goes away.
When Tyler was young, he never spoke, even when he was 2.5-or 3-years old. Finally, when he did speak, we couldn’t understand a word he said. Some of the doctors believe that when the valley fever went into his head, it could have damaged the speech part. But we don’t know. I had to take it upon myself to buy a sign language dictionary and teach him the words for water, hungry, etc. Now, at 7, his speech is still impaired. He doesn’t have any friends at school. He’d rather stay home.
There needs to be more resources and awareness of resources. The schools need to be more aware. They don’t understand. Valley fever affects your entire family. When a parent has to be outside at the hospital, who is going to take care of the other children? Truancy became a problem with my daughter. We were gone for the holidays, Christmas at the hospitals. I had to call friends to take my other kids presents.
The biggest problem was the lack of awareness about valley fever. There wasn’t any support that I knew of as far as resources, transportation or meals. People think of this as an adult disease or even a child disease, but no one thinks of the babies. You think it couldn’t happen to you. But if you have family members bearing children, they’re all at risk. We need a vaccine.
9. A Husband’s Untimely Death and a Wife’s Plea for a Vaccine: Cheryl Youngblood, 61, Bakersfield
My husband Michael Youngblood was diagnosed with valley fever in 1997. He was off work for several months, taking both the maximum dosage of Diflucan, as well as amphotericin B through IVs three times a week. He got better and was able to return to work.
But in February of 1999, he woke up vomiting and with a severe headache. He was diagnosed with cocci meningitis, which meant the valley fever had disseminated into his brain. They had to inject the anti-fungal medications directly into the back of his neck, at first once a month, then once a week. He had more small strokes and other physical and mental issues.
On January 9, 2001, my big, strong healthy husband of 30 years died at age 49, a 144-pound shell of his former self. He left behind four children and two grandchildren. It was just three months shy of our 30th wedding anniversary.
He was able to walk our first daughter, Jennifer, down the aisle as a healthy dad. He walked our second daughter, Amy, down the aisle as a sick dad. But he was not around to walk his baby girl, Stacie, down the aisle. That was his biggest regret. While we were dancing together at Amy's wedding, his eyes filled with tears as he told me he knew he wouldn't be there for Stacie's wedding.
What makes his story especially poignant is that he was a volunteer for the valley fever vaccine trials of the early 1980s. He actually received the vaccine they were testing at that time. Had it been effective, he would be with us still today, enjoying our expanded family of eight grandchildren. He would have been here for Stacie's and our son Steven's wedding, for the college graduations and all the holidays when his presence is missed. This is why the vaccine trials need to continue, so that no more families have to suffer losses like ours and so many others.
Do you have a valley fever story to share? Write to firstname.lastname@example.org 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 email@example.com.
- 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.