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 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 nonprofit 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 email 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.
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.
An Infant Suffers and Survives: Tyler Thomas, 7, as told by his mother, Sonya Hodge, 44, Bakersfield
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.
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 Jan. 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.
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.