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The CoolRVers are actually a couple of retirees, Judy and Luke Rinehimer and our 5 year old German Shepherd Dog, Miss Shady Lady. We are "extended-time" travelers with a home in Cool, California. Thanks for following along with us as we travel North America in our "rolling condo", enjoying the RV lifestyle. Your comments are always welcomed.



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Wednesday, April 26, 2017

"V" IS FOR VALLEY FEVER (#AtoZChallenge)

Valley Fever is not some light-weight ailment that you associate with an exotic island.  It is a fungus-based spore that you breathe in that can kill you!  Today's "A to Z Challenge" blog letter of the day is "V" so I am taking this opportunity to educate my readers about VALLEY FEVER!!!



I HAVE VALLEY FEVER

Yes, I have Valley Fever and this blog will detail what it is and what you can do about it.  The Valley Fever Awareness page from the Center for Disease Control (CDC) states:
Valley fever is a fungal lung infection that can be devastating. Learning about Valley fever can help you and your doctor recognize the symptoms early. Valley fever is an infection caused by a fungus that lives in the soil. About 10,000 U.S. cases are reported each year, mostly from Arizona and California. Valley fever can be misdiagnosed because its symptoms are similar to those of other illnesses. Here are some important things to know about Valley fever, also called coccidioidomycosis."  [** See Update Below]

MORE INFORMATION ABOUT VALLEY FEVER (VF):

The Valley Fever Survivor website (http://www.valleyfeversurvivor.com) is a wonderful non-medical advocacy group that has provides excellent information and resources we can all learn from. I also participate in their Facebook Survivor discussions. I also highly recommend you get their book:  Valley Fever Epidemic.



Here is a YouTube overview video about VF and the book written by David and Sharon Filip.

4:01 YouTube - https://www.youtube.com/watch?v=3gakZ6aU0t4

MY VALLEY FEVER STORY

I was attending the Albuquerque International Balloon Fiesta in 2011 and about two weeks into our stay I developed severe flu-like symptoms with extensive body convulsions, constant coughing, night sweats, headache, and total exhaustion.  I was too sick to even take my temperature.  A week later I finally went to an Urgent Care facility in Surprise, Arizona and was diagnosed with Bronchitis and given a steroid, Prednisone

Two weeks later we returned to our home in Northern California and I was still extremely sick. I immediately saw my primary care physician (PCP) who ordered a chest x-ray. We discussed my travels to the Southwest so I asked if it could possibly have Valley Fever. I had only heard about VF in dogs but my PCP was very familiar with the fungus disease because he had done his internship in the Phoenix, AZ area, a prime endemic area for VF.  When he saw "spots" in my lungs from the x-rays he immediately ordered a CT-Scan and put together my new medical "team" that included an Infectious Disease (ID) specialist and a Pulmonologist who both were familiar with VF.  

VF SPOTS IN MY LUNG!!!
Further blood testing and two bronchoscopy exams positively confirmed I had Valley Fever with a "titer score" ratio of 1:8 which meant I had a "moderate" case.  They immediately began treatment with an anti-fungal medication called "Fluconazole".  [See Point #2 below] That drug stopped the growth and spread of the coccidioidomycosis spores.  

Thankfully, I never suffered from "dissemination" of the spores to my joints and other organs. I also never had the associated body rash nor did it spread to my spinal cord where it can travel to the brain as Meningococcal Meningitis.  You are never "cured" and it can stay in your body and can "reactivate" at any time in your future.  My worst fear!!!

MY MISSION TO EDUCATE OTHERS ABOUT VF

The following information is something I wrote a couple of years ago as a one-page hand-out. It has been distributed at seminars when I have presented information about Valley Fever at RV rallies. I also email copies to folks who are having difficulty with their health and showing symptoms of Valley Fever (VF) or to their friends who can't figure out what is wrong with them.  

PLEASE CLICK ANY HIGHLIGHTED LINK TO LEARN MORE.

MY ADVICE FOR PEOPLE WHO THINK THEY MAY HAVE VALLEY FEVER

I developed Valley Fever (VF) in Albuquerque, NM in 2011 so I have become a self-educated "expert" on this nasty fungal disease.  The official medical name for Valley Fever is:  Coccidioidomycosis.  The other nickname is "cocci" (pronounced cocksey).  The blood test score “titer” is pronounced Tie-ter.

Chances are your primary care doctor will NOT know much about VF, if he/she has even heard of it.  Be sure to tell the doctor if you HAVE BEEN IN THE ENDEMIC AREAS prior to your feeling ill.  It takes 10-14 days for the symptoms to present themselves.  You can say you were traveling in the Southwest or California Central Valley (and now in other states).

1. Your first step is to request the VF "cocci" blood test (see link below).  This simple blood test can confirm if you have VF and, if so, how much exposure you have had. Ask your doctor/lab to send it to UC Davis (THE specialist lab for evaluating VF blood samples) and then send the results back to your doctor.  It can take 10-14 days to get the results because this is a fungus test that must have time to grow.  [See link below]

2.  If your blood test comes back positive, the numbers will determine your follow-up. The results are called "titer scores" and are presented as a ratio.  <2 = no VF.  My first test came in as 8:1 (moderate).  16:1, 32:1, 64:1 are more serious cases.  4:1, 2:1, 1:1 are milder scores.  I am currently "NEGATIVE" but I will always have VF. You should request to see either a pulmonary doctor or an "infectious disease" (ID) specialist with knowledge about VF for follow-up. See the link below for the "Valley Fever Center for Excellence" and they can help you find a doctor that knows about VF. 

I am including more useful links (see below) and documents that will give you an overview of VF. The Center for Disease Control VF information (good to give to your doctor), and links to studies and survivor websites will help with your understanding of this disease.  For the most part these sources are written to be understood - non-techie.

The Valley Fever Center for Excellence (http://vfce.arizona.edu/) also has tabs for about VF in dogs, cats, and other animals. 
"The most common early symptoms of primary pulmonary Valley Fever in dogs:

    • coughing
    • weight loss
    • lack of appetite
    • lack of energy 
    • fever 
    Some or all of these symptoms may be present as a result of infection in the lungs. As the infection progresses, dogs can develop pneumonia that is visible on x-rays."
    Source:  http://vfce.arizona.edu/valley-fever-dogs/symptoms
    The Valley Fever Survivor website (http://www.valleyfeversurvivor.com) is a wonderful non-medical advocacy group that has produced excellent resources.  I also participate in their Facebook discussions: VALLEY FEVER SURVIVOR SUPPORT GROUP #1 for Answers, Info, & More since 2002.  This is a "closed" group but just ask to "join".
    **UPDATE:  In reviewing this blog, Sharon Filip, co-founder of Valley Fever Survivor, advised me that this CDC page (linked above) statement is wrong:  "Hundreds of thousands of Valley Fever Cases occur each year. Reporting is extremely inaccurate as it is believed only 2% of cases are diagnosed accurately leaving 98% either undiagnosed or misdiagnosed."
    According to Sharon, "What the CDC page states is not quite accurate... We have spoken with the CDC about accuracy in the past and how important it was to put up the proper information but they will do what they will do. ... All the information by the founders have been studied and researched for accuracy for the past 15 years."

    Get the Filip's book Valley Fever Epidemic and share it with your doctor, your friends and family.  This is my copy that I do share...

    There is also a petition drive to warn tourists and Arizona residents about the "dangers of Valley Fever" as part of a VF awareness campaign.  The sponsors are also seeking more "funds for vaccines and cure projects". Feel free to circulate the following petition.  Kern County in the endemic area of Central California is also now doing an awareness campaign using billboards and public service announcements.



    MORE RESOURCES...

    The Center for Disease Control (CDC) (quoted above) has extensive research about COCCIDIOIDOMYCOSIS diagnosis and treatment.  My health team from Northern California Kaiser followed their "protocol" for my early treatment of Valley Fever. 

    The Infectious Disease Society of America has an Oxford academic presentation about Valley Fever called:  
    2016 Infectious Diseases Society of America (IDSA) 
    Clinical Practice Guideline for the Treatment of Coccidioidomycosis 

    University of California, Davis (UCD) Department of Medical Microbiology and Immunology is a leader in research and clinical care for coccidioidomycosis, commonly known as Valley Fever. You can go to their website link above and locate the information about the cocci blood tests they will evaluate. CLICK HERE for the blood test order form.


    MY PROGNOSIS

    As stated above, I currently test "negative" for Valley Fever but I still have one 2.3 cm "nodule" stuck to the back wall of my left lung that is visible in my annual C-T scan. We have been monitoring it for a few years and it actually shrunk this past year from 2.5 cm to 2.3 cm.  Yea, progress. :-)

    I annually do two cocci blood tests through my Kaiser Permanente labs and the samples are sent to either the UC Davis Serology Lab (see above link) or to Quest Labs for evaluations.  My Infectious Disease doctor wants me to have less exposure to radiation so now I only do one C-T Scan annually instead of the two or three I was previously having.  She reviews the images and we do a telephone appointment to discuss the results.  She told me this monitoring will be done for "the next 15 to 20 years". So at age 68 I was happy to say "I can live with that!"  Anytime I think I might be having a relapse I am directed to go to an Emergency Room (ER) with my binder of Valley Fever information and previous test results.


    WHAT YOU CAN DO

    Read, read, and read.  Help me spread the word about this potentially deadly fungus, coccidioidomycosis, commonly called Valley Fever.  May you never get it!






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