Rhonda’s Story

Beating The Odds

My name is Rhonda. People beat the odds all the time, so there’s no reason why we can’t be among them. Still, the most useful advice I received as a patient pertained to the prednisone. A friend who is a lab supervisor for a pharmaceutical company told me, “Always remember – it’s not you, it’s the pills.” But my other friend, a science fiction/fantasy writer reminded me of a motto from the world of swords and sorcery: “Heavy magic comes at a price.”

Still, I know I’m one of the lucky ones. Things started going downhill into vasculitis land in March 2002 when I woke up one morning with a terrible pain in my neck and couldn’t close my jaw. After six months of treating the pain – which would pop up elsewhere — I ended up in a hospital at Thanksgiving 2002 with pneumonia and congestive heart failure.

A battery of blood tests revealed severe anemia, an astronomical sed rate and reduced kidney function. Because I was “an interesting case,” I had visits from a cardiologist, a pulmonologist, a rheumatologist, a nephrologist and an infectious disease specialist. My kidney function improved, so the nephrologist then dismissed the idea of a kidney biopsy, posed by my PCP.

After that, I had six months of continued anemia, continued high sed rate and more blood tests. I felt better, but my PCP was adamant that I was not out of the woods yet. Finally, a summer cold slid into bronchitis which then plunged into, once again, pneumonia and congestive heart failure. CT scans showed that my kidney was mushy, but its function improved again while I was hospitalized.

A new nephroligist succumbed to my PCPs nagging for a kidney biopsy, all the while saying, “I don’t see why but he wants it so we’re doing it.” A couple of weeks later, the nephrologist called me back, “I don’t believe it. We found something in a tiny vessel deep inside your kidney.”

I underwent treatment with prednisone and Cytoxan, with a battery of high blood pressure meds to counteract the side effects. I had trouble coming off prednisone because I developed pleurisy/costochondritis/whatever, depending upon who you asked, at low doses of steroids. One time, doctors mistook that for pneumonia and hospitalized me twice until a doctor with experience with lupus patients recognized what was happening.

Bottom line: diagnosis for me took about a year and a half (counting the debilitating case of TMJ that heralded the start of the downward slide). I was on Cytoxan for a year and a half and prednisone for three years. I’m still taking blood pressure meds, although my treatment for vasculitis itself is over.

Published: December 2006

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