Cindy’s Story

Wrestling The Unknown

My name is Cindy. For the first 43 years of my life I was “boring” from a medical perspective. I worked out regularly and had no real medical history. I was neither underweight, nor overweight. I worked out regularly and had no real medical history. In fact, my visits to a doctor were rare enough that I had no real name to write when asked to fill out the name of my doctor.

Even in my 43rd year, the disease entered into my life in a low key fashion. I had a mysterious “bruise” that persisted intermittently for months. An MRI showed “inflammation” and the doctors thought I had a deep tissue bruise. There were other events as well that barely registered a blip on the medical screen. I had occasional blurry vision that the eye doctor thought was allergies. At times my ears felt like I was underwater and the ENT felt I had a Eustachian tube problem. And of course that bruise would come and go….

Yes, my vasculitis was wily in those early days. Typically my symptoms would clear up to coincide with my doctor’s appointments. I felt like a hypochondriac as I would describe my symptoms but lacked the physical evidence that the doctors would find helpful. I assumed that all these little physical annoyances were just that and that they did not relate to each other. As the saying goes, hind sight is 20:20. And, life was still pretty normal.

I can pinpoint the exact day that it stopped being low key. It was at 2:00p.m.on May 6th, 2005. Everything up until then was pale by comparison. That day, I felt a fever sweep over me and an intense ache in all my muscles. Although I had trained for a 10K race the day before, I could barely lift my legs to climb my stairs and plod into bed. At the school where I worked, Strep, Fifth’s disease and assorted viruses were making the rounds. I thought I was a casualty of one of those culprits. Aspirin became my ammunition. Time, however, was not my ally. As each day passed, more and more was going wrong with me. Of importance, my bruise was back and was now surrounded by red dots which the doctors called petecheae. Other new symptoms included pins and needles in my extremities which attacked my limbs one by one. Fevers and night sweats taunted me each night. Soon, weight loss and swelling of my ankles and feet joined rank with the ubiquitous muscle and joint pain. I could no longer run, walk or stand.

By now, I was having extensive amounts of lab tests run. More and more abnormal labs were “flagged” each time as if my body was surrendering to the disease. A neurologist, dermatologist and rheumatologist were working diligently on my behalf. I had MRI’s, Doppler sonograms, skin biopsies and an angiogram–all yielding little information other than “inflammation”. I gave my blood like a trooper hoping the doctors would know how to help me fight whatever was going on. I gave over 50 tubes of blood for lab tests that June. Many tests registered positive for inflammation but, where, why and when were still unanswered-even with a positive P-Anca. My enemy was still unnamed.

It was a simple routine test-an abnormal unrinalysis that solved the puzzle.My internist phoned me. “Cynthia, we need to add another doctor to the mix-a nephrologist.” My nephrologist, Dr. Kittaka, recommended a kidney biopsy. He warned me that a biopsy is like finding a needle in a haystack and that it was possible we might not get a telling sample. The kidney biopsy indeed captured a piece of offending tissue and the diagnosis of Microscopic Polyangiitis (MPA) was nailed.

Although I was seriously ill, the news that I had a disease like this shocked me. In my mind, I hadn’t expected anything as serious as MPA. Words reverberated in my mind: rare, life threatening, incurable… The drugs I needed to heal were explained to me. More words: hair loss, weight gain….. I was started on prednisone and oral cytoxan. Within 4-6 weeks, my lab tests returned to normal. I was now winning the battle! Physically, I was healing. Emotionally, I remained scared.

Attitude is important in winning a war. I still lacked positive belief and hope. A friend recommended I call the then Wegener’s Granulamatosis Association. I remember apologizing that I didn’t have WG when I called. I was assured it didn’t matter. I will forever be grateful I made that call. I met people that had dealt with vasculitis for decades. They filled me with hope and inspiration. Having fought the vasculitis fight themselves, they alleviated most of my fears and worries about my future. Most of what I worried about never came to be-including hair loss. They are, and will forever be, my vasculitis mentors.

I continued the Cytoxan and prednisone for 6 months. I used various amounts of Imuran as my maintenance drug for the next 9 months. I am in remission and have been off all medications. Life is good.

Currently I am back to teaching, being a wife and a mother. I have even run a few 5 K’s. I have received excellent medical care from Dr. Martin K. Kittaka from Elmhurst, Illinois and Dr. Gary Hoffman from the Cleveland Clinic.

Life has come full circle and is even fuller from this experience. I treasure each day and find time to pursue the dreams close to my heart. One of those dreams is to help others with MPA and vasculitis find support, hope and inspiration to face the challenges of vasculitis. Along these lines, it is my priviledge to be a member of the Education and Awareness Council with the hope of building solidarity for the support, research and awareness of vasculitis.

Published: December 2006

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