By THE REPORTING ON HEALTH COLLABORATIVE
During the five months that The Reporting on Health Collaborative has been publishing stories about the scourge of valley fever, many readers have come forward wanting to tell of their horrific battles with the illness.
Today we share more of them in a continuing effort to educate the community about how valley fever manifests itself. Public education, experts say, is among the best ways to combat what is often a misdiagnosed and mistreated disease.
ABOUT THIS SERIES
The number of valley fever cases has soared so high in recent years that health experts are calling it "The Second Epidemic."
In an occasional series that continues today, the Reporting on Health Collaborative is exploring the rise of cases, the tricky science of studying the disease, the high costs to patients and taxpayers, the lack of private interest in funding treatments and vaccines, and the long history of inaction by government agencies.
You can read the series so far at www.bakersfieldcalifornian.com/special-sections/just-one-breath.
ABOUT THIS REPORTING TEAM
This project results from a venture -- the Reporting on Health Collaborative -- that involves The Californian, the Merced Sun-Star, Radio Bilingue in Fresno, The Record in Stockton, Valley Public Radio in Fresno and Bakersfield, Vida en el Valle in Fresno, the Voice of OC in Santa Ana and ReportingonHealth.org.
The collaborative is an initiative of The California Endowment Health Journalism Fellowships at the University of Southern California's Annenberg School for Communication and Journalism.
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.
Jerry Walker, Bakersfield, 59
My name is Jerry Walker and I am a valley fever survivor.
I was not born and raised here. In late 1991, I was working as a petroleum engineer for one of the largest oilfield service companies in the world. Around the second week of November, I was working on the west side of the valley and experienced a very windy day with blowing sand.
Two weeks later, I got up to go to work, but I felt very ill. I had great difficulty breathing, and I felt very weak. My wife agreed that I should go see a family physician, which we did that same day. He listened to my lungs and said I sounded congested and diagnosed me with a touch of pleurisy and released me to go back to work. I returned to work that same day, but my symptoms were getting much worse. I managed to drive home and struggled into the house. My wife determined we should head straight to the emergency room.
By time I reached the hospital, I could not breathe. I had a totally collapsed lung caused by fluid build-up. I was admitted to the hospital and a cardio-pulmonary specialist was called. He told me he suspected valley fever but blood tests had to be run to be sure. In the meantime, he needed to drain the fluid so my lung could re-inflate.
I was put on Diflucan, but it didn’t do anything for me because the disease was too far advanced. Doctors then tried Amphotericin B. It’s in a liquid form and dispensed through an IV. It’s very much like what a cancer patient would take for chemotherapy, and it makes you very sick. I had to have that intravenously every other day for seven months.
I was at San Joaquin Community Hospital, and my clinical care pulmonary specialist was really concerned because I kept filling up with blood in the pleural cavity, the sack that surrounds the lungs. When that happens, you can’t breathe. He had to figure out some way to stop this blood from building up, so he gave me a chest tube — basically, they cut a hole in your side while you’re awake, insert a tube into the pleural cavity and drain out the fluids.
But the fluid kept coming, so they chemically sealed the pleura to the lung.
It was successful, but my lung capacity is not what it was. It’s similar to someone who has use of half of a lung.
I was in the hospital until August 1992, and went back to work in September. But my energy level has never returned. There are days when I just feel horrible. It’s not the breathing, so to speak, it’s just the energy level. You can think of it as a cancer survivor in remission. The cancer is still there, but in remission. It’s the same thing with valley fever: You never really get rid of it, it’s just dormant.
It’s frustrating that there is not more money for valley fever research, and no proven pill to prevent it. It’s just frustrating because you know more people are going to come down with it, and there are going to be more stories. I also believe that companies should educate their employees about valley fever, especially people that are being brought in from other states. They ought to be forewarned about it.
Coming Monday: Two more locals share their stories