After a trip to Arizona, I became ill with Valley Fever on October 19th, 2001. A condensed version of my story follows. A complete account of these events will appear in our upcoming book.
One of my sons started graduate school in Arizona in August 2001 and we were all excited about his move. While there I decided to see new homes in all areas of Tucson. The sky was blue, the sun was bright, and the air was warm. This was much more appealing than Seattle’s winters.
I was there longer than expected due to September 11th and needed to return to Seattle to make up for lost time. I was devastated by the terrorist attacks but I knew that I needed to resume a normal life. My yard was in need of work so I busily went to work outside in hopes it would help me keep sane in an insane world. One week after arriving home I became extremely sick. I had trouble breathing and became bedridden. I usually avoid doctors but I felt I had no choice but to see one.
After looking at my chest x-ray, my doctor informed me that I had “a typical case of bacterial pneumonia.” I had a severe allergic reaction to the antibiotics I was given and I continued to get worse. I refused to go to a hospital so I was sent to see a pulmonary doctor. He performed a bronchoscopy, hoping to find what I was dying from. When A) I could barely breathe, B) my head was in excruciating pain because my brain was pulsating as if trying to come out of my skull and C) my wheezing sounded like the death rattle, I truly believed I was dying. I told my husband that I probably went to the doctors too late to be helped and that I would rather die at home than in a hospital.
To my surprise, I survived. Eventually my bronchoscopy results were in. I received a call from the pulmonary doctor who informed me that he knew why I was so sick. It wasn't bacterial pneumonia. He happily announced, “You have Valley Fever.” Naturally, he wasn’t happy about my suffering, but he was glad finally to know the cause of my illness. He went on to explain what he knew about Valley Fever. I had never heard the term mentioned before my diagnosis.
My case was especially serious because I believe my cocci disseminated to cause meningitis. I was never checked for it because I don’t think my doctors knew what to look for, but descriptions of disseminated coccidioidal meningitis match my symptoms perfectly. Many people have headaches with Valley Fever but I had a severe head pain. That pain never eased up day in and day out. Tears would stream down my face involuntarily. It felt, as I described it to the doctors, as though my brain was pulsating, enlarging, and trying to push its way out of my skull but my skull wouldn’t let it leave. After reading about meningitis and considering my 1:64 titer, I believe I was one of the few victims of Valley Fever to survive its disseminated meningitis without medication.
An awful lot of time had elapsed and many chest x-rays later I started to show some improvement. Because of my inability to take most drugs, my pulmonary doctor was afraid to start me on any of the fungicides used in coccidioidomycosis treatment. In fact, he thought the drugs might cause my death rather than get me well. He told me, “You survived this on your own. We didn’t do a damn thing to help you.” He obviously wanted to but it just didn’t work out that way.
I am glad to say I am back to walking three to five miles every day but, unfortunately, not always in one session. Some days are better than others. At times it feels as if there’s a cinderblock on my chest. I continue to have breathing problems and sometimes I have severe joint and bone pain in an elbow and/or shoulder. The middle of the night is when the pain is at its worst. The burning sensation in those areas is extremely unpleasant. Just recently, I have had the return of my right ankle’s swelling and burning sensation. This was also prevalent during the height of my illness. Fortunately it isn’t always that way.
Before contracting Valley Fever, I exercised every day and ate healthy foods. I believe that may be why I survived my case of Valley Fever. I intend to continue these habits in hopes of maintaining better health. I was not in one of the high-risk groups at all (no immune deficiency, not African-American or Filipino, not over 65, etc.), so I prove that cocci can truly hit anyone.
My son David is a freelance writer. He unfortunately witnessed the horrors of cocci by taking care of me day and night. My miraculous survival after contracting this disease, and having a near death experience inspired our organization's name "Valley Fever Survivor." Most people were totally unaware of Valley Fever, let alone were they led to think of it in such severe terms if they had heard of it. Those three words together were unheard of at that time but have recently become well known due to our organization's hard work. When I decided to create valleyfeversurvivor.com he was eager to help.
Sometimes I get very angry that this has happened to me. I researched Arizona very carefully before my other son's move and my visit, specifically looking for important facts to know about Tucson, Phoenix, and Arizona as a whole. I found no mention of this disease on the tourist bureau or chamber of commerce websites or in any of their tourism literature. I was not given a choice as to whether or not I would go there if I knew about the possibilities of Valley Fever, nor was my son before deciding to attend school there.
How many millions of people pass through, vacation in, relocate or retire to, or attend colleges, universities, or sporting events in these endemic areas without any prior knowledge of Coccidioides or the illness it creates? How many don’t even know today?
We have an important mission to accomplish. I do not want anyone else to suffer the way I did. All those who lost their lives or were debilitated by Valley Fever need a voice for action.
Share Your Valley Fever Story
I am determined to bring national and international attention to this disease. This website has a questionnaire, a poll, and three surveys that can help gather important information for our upcoming book. We would appreciate hearing from anyone who has had a Valley Fever infection or any owner of an animal affected by Valley Fever that would like to share their story.
If you have contracted Valley Fever, please click here to fill out the questionnaire. You may also complete a questionnaire on behalf of a family member who has unfortunately died of the disease.
If you are or were a university student, college student, faculty, or military personnel in an endemic area, please fill out this survey whether or not you are infected with Valley Fever.
If you have or had an animal that suffered from Valley Fever, please take the animal survey.
If you have visited or intend to move to an area endemic to Valley Fever, please click here to answer our general survey.
Our opinion and information poll can be taken by anyone who either has Valley Fever or simply knows someone with Valley Fever and will show us how you feel about this disease.
The poll, questionnaire, and surveys are extremely important and will help us facilitate political changes and to improve awareness of this illness. We want information from as many people as possible but please let us know if you would prefer not to be included in the book. Thank you.
This web site also has information for those that were infected with Valley Fever and those who want to educate themselves on the subject. It is our goal to raise public awareness of Valley Fever and to institute public policy changes that will protect Americans from Valley Fever. Hopefully this will lead to money for a vaccine and a cure. My son David and I are presently writing the most comprehensive book on Valley Fever ever made for the lay person or medical professional. If you wish to contact us, please send an email to firstname.lastname@example.org. Please click here to find out how you can become a voice for action.
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