By Patric Hedlund
Friends of Katy Cruse are putting up signs and making plans this week for a benefit May 5 to help the pretty young mother and Realtor in her battle against complications from Valley Fever.
Sue Nichols is spreading the word in emails, ads and in conversation at Sue’s Tavern. Ashley Morris placed a heartrending blog online last week, telling of the recent visit to her friend’s home and of the excruciating medical complications Cruse is suffering—all in good spirits while raising three children and holding down a job.
Valley Fever is a fungal spore that soars through the air with flying dust, then plants in the lungs when inhaled. Anyone can get it—even your dog.
In the United States it is most frequently diagnosed in Kern County, the Antelope Valley and in southern Arizona.
U.S. Representative Kevin McCarthy (Dist. 23–Bakersfield) said on Monday that his own mother-in-law has been diagnosed with the disease, after living in this area for 40 years (in the past he mentioned his in-laws lived in Lebec).
McCarthy held a press conference from the Centers for Disease Control (CDC) in Atlanta, Georgia on April 22. He said he had toured the CDC labs that day and talked with administrators about ways to get effective testing for diagnosing Valley Fever available quickly, to run clinical trials to determine “best practices” for treatment and to hasten development of a long-promised vaccine to help prevent the disease.
A brave struggle
Back in the Mountain Communities, Katy Cruse, 29 said in an interview two days later, April 24, that she began coughing up blood sometimes in 2010, but that she felt basically ‘normal.’
The story of her battle explains why there is a sense of urgency in the Southwest U.S. to find effective diagnosis and treatment for the illness. She has a long tale of the struggle to get a diagnosis.
Starting in 2010, she had batteries of blood tests and was repeatedly told, “there is nothing wrong with you, we just don’t know why you are coughing up blood.”
She said that an X-ray showed she had “a hole in my lung the size of a nickle” but then another year passed as they tried to discover why. She went to a clinic in Mexico “to run every test known to man,” with no results.
She was even quarantined for four days in a hospital in Bakersfield because public health authorities thought she might have tuberculosis. She did not.
Finally, in December 2012, just around Christmas, indicators for Valley Fever showed up in her blood work. She was told that she had “harbored” the infection in her body for years, feeling and appearing healthy, until it had finally progressed enough to be diagnosed. She said she registered as “16” on a scale of 1 to 40, regarding severity. But doctors told her she would have to have her lung removed right away. They said that the blood in her throat was because the Valley Fever hole is near her bronchial tube and they had to move forward with surgery to avoid complications.
In preparing for surgery, a CATscan was taken that showed the hole had now grown “to the size of a half dollar.” But an even more brutal surprise lurked in the new information.
An opportunistic secondary fungal infection, Invasive Pulmonary Aspergillosis (IPA) was discovered.
This is another fungal growth, “like a cheese puff,” growing inside the hole created in her lung by the Valley Fever, Cruse said, repeating how it was explained to her. Doctors said the IPA is “highly dangerous and if we had operated, and let that loose in your body, it could have killed you.”
They gave her a prescription for medicine to attack the IPA to try to shrink it so that she could go forward with the surgery. But when her friend went to pick up the medicine, he called her on his cell phone to ask: “Katy, did you know this stuff costs $2,000?”
That story opens up another twisting tale of the difficulties of insurance, the impossibility of obtaining health coverage, of the generosity of her employer, All Seasons Realty, that kept her employed through all these trials and how they were tricked when it turned out a plan for which they had been paying $300 a month for two years covered only 20% of her hospital expenses.
Luckily, Pfizer has just taken her into a special drug subsidy program. Cruse will be able to go for another 6-week round of the medication to shrink the “cheese puff” IPA in hopes that she will then be able to have the surgery to remove the Valley Fever lesion before other complications can set in.
All of this Cruse tells with an eager, matter-of-fact voice, as if she is recounting a journey filled with surprises. She is surrounded by the love of friends and family, and is still filled with strength for the fight.
McCarthy seeking coalition
McCarthy said the state of California has spent $23 million on medical care related to Valley Fever in its state prison system alone. He said the state should be strongly motivated to work with other affected states, such as Arizona, the CDC, the National Institutes of Health and other federal groups to create a coalition with a shared interest in informing the public, educating medical professionals and eradicating the disease.
Next week, more about the specifics of McCarthy’s plan
This is part of the April 26, 2013 online edition of The Mountain Enterprise.
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