Crystal’s Story

My name is Crystal. I knew something was terribly wrong and to be so mistreated left me feeling alone, frightened, and then angry! I transferred my care, but the new physician’s appointment was weeks away. I continued working, noticing an increasing fatigue which I was told was due to being slightly anemic.

My first visit with my new physician on May 8, 2009, resulted in an emergency hospitalization for several blood transfusions. I was spilling red blood cells in my urine at a very high rate. I then remember going into respiratory distress, working so very hard to breathe and was so relieved when they brought in the equipment to insert a breathing tube and attach me to a ventilator. I was put in a medically induced coma, so I have no recollection of the following 3 weeks.

The critical care nurse was now a critically ill patient, in pulmonary failure, acute kidney failure, and heart failure. My family was told I would not survive. A blood test revealed that I had antineutrophil cytoplasmic antibody (ANCA) positive vasculitis and the decision was made to see if I could tolerate a small dose of Cytoxan (a brand of cyclophosphamide). This allowed my condition to improve enough to be taken off the ventilator! Several doctors informed me it was my good physical fitness that had saved my life. Now all my muscles had atrophied and I had to learn to walk again. Thus began my long journey of recovery. I learned how difficult it is to be your own patient advocate when you are so sick, and I am eternally grateful to my sister.

In April 2010 my ANCA test come back positive. I was told that there were red blood cells in my urine and that I would need more chemotherapy. I decided to see a specialist at the University of North Carolina. What great news! There were no signs of a flare. No chemo would be needed! I returned home with a confirmed diagnosis of Microscopic Polyangiitis (MPA) and was put on maintenance azathioprine (also known under the brand names Imuran and Azasan).

Skipping ahead to May 2011 finds me in remission, physically strong, and feeling well. It took a while, but my kidney lab tests are back in the normal range! I am grateful to my two nephrologists, Dr. Mark Barney in Las Vegas and Dr. Ronald Falk in North Carolina. I am not the same person, and life is different dealing with fatigue, peripheral neuropathy, and constant medical appointments. I now try to live each day as a gift and an opportunity for growth and self- transformation.

Published: May 2011

To read more stories, please visit the Vasculitis Stories landing page.


 

Vasculitis Foundation

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the health care professionals who care for them.