Bernadette Madrid, Bakersfield, 29
I’ve been diabetic since I was 10. I got really sick with valley fever in 2006. It’s been a long seven years.
I thought I had a flu that wouldn’t go away and I had severe pain in my ribs. I also noticed that my vision was becoming blurry, and I thought maybe I needed glasses.
I went to see a doctor here in Bakersfield, and was tested for practically everything except valley fever. The doctor saw rupturing blood vessels in my eyes, and thought I had gotten broken glass in my eyes or had a scratched cornea. As for the pain in my bones, the doctor told me it was neuropathy — damage to a nerve or nerve group that results in a loss of movement, sensation or function of that nerve — but I knew it wasn’t that, because I had feeling in my fingers, legs and toes. But I was misdiagnosed, and given morphine for the pain.
After four months, I was finally diagnosed with valley fever, and prescribed Diflucan. But that didn’t work at all, because my valley fever was such a serious case. Even though I was taking the Diflucan, I was just getting worse. I was so sick I didn’t have the energy to even go out with my friends. I didn’t feel like talking on the phone or working out. I just slept. The most I did was walk to the living room and back. It was to the point that I couldn’t stand up or get out of bed.
I went back to the doctor and was hospitalized. My parents were told that I was not going to make it, and they should start preparing for my funeral.
They put me on Amphotericin-B. They have to check your blood and kidney levels before administering the medicine, and sometimes my kidney levels were so high they’d have to skip a day. That’s a terrible medicine. During that whole process, I went from 125 pounds to 80 pounds — I was really sick.
I stopped seeing color, and little by little, I couldn’t see light. I had more than seven surgeries and eye procedures at the Jules Stein Eye Institute at UCLA, trying to save my eyesight. But I lost my eyesight during my battle with valley fever. Now I’m completely blind — I have no light perception.
The Amphotericin pretty much killed my kidneys, and I had to be put on dialysis for two years. On Sept. 28, 2012, my father donated his kidney to me. I’m so healthy right now — I owe him so much.
When I was sick, I knew my eyesight wasn’t going to get better, so I taught myself to read Braille. I could only do so much while I was lying in bed. I taught Braille at a blind school, and subbed for a computer class, but I quit before my transplant.
I’m on medication for the rest of my life. But currently, everything is good and under control — I’m keeping my fingers crossed. Although sometimes, when I get a cold or a flu or something, it doesn’t feel like a normal cold or flu, it feels like a more intense illness. I stay inside when it’s really cold, and I stay away from people who are sick. I don’t want to risk getting sick, and flaring up the valley fever again.
My dad read me the valley fever stories that ran in the newspaper. It’s crazy how it affects people in different ways. Today I’m alive, and I’m grateful for that. I really have nothing to complain about.
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.