Beginning

 I have ANCA Vasculitis which is to say I have anti neutrophil cyctoplasmic antibody Vasculitis, a rare autoimmune disease that attacks 5 out of a million people.  Symptoms include runny nose, sinus headaches, shortness of breath, purpura (red and purple bumps on the skin), edema, nosebleeds, and it affects the nervous system causing tingling, aches and pain.  It affects many areas of the body but has the most impact on the lungs and kidneys. Without treatment life expectancy is 5 months.  With treatment about 80% can live 8 years.  The cause is unknown but it is suspected some bacterial and viral infections play a part.  There are three disorders associated with ANCA Vasculitis, granulomatosis with polyangilitis (GPA), microscopic polyangilitis (MPA), and cosinaphilic GPA (EGPA).  I have GPA ANCA Vasculitis.

The primary symptom that took me to emergency rooms three times was nosebleeds.  They started without any cause and would not stop.  The first emergency room at NYU Langone told me that I must have been picking my nose.  I had been asleep with a cpap mask on my face.They said well just leave your nose alone.  They placed cauterized gauze in my nose which stopped the bleeding and sent me home.  The second  time, again at NYU Langone they told me it was the dry heat from my radiators.  So they said ‘moisturize your nose’ ; placed cauterized gauze, stopped the bleeding and sent me home.  The third nosebleed sent me to the Emergency Room at Lenox Hill Hospital and they didn’t send me home.  They sent me to their ICU.  

It was in October, 2018 that I had my first nose bleed.  The blood test on 10/25/2018 showed my BUN was at 39.  BUN is blood urea nitrogen.  The liver produces nitrogen as a waste product and with oxygen carbon and hydrogen it makes BUN, a waste product that it sends to the kidneys via the blood so it will be excreted.  My blood test showed that my BUN was 39.  Normal BUN is between 8 and 26.  Creatinine is another waste product sent to the kidneys for excretion.  My creatinine was 3.08 the normal range is between .7 and 1.3.  I did not know the significance of these numbers at the time. There were doctor visits and subsequent tests on 10/1/19 and 2/7/20 that showed BUN at 25 and later at 10.  Creatinine was at 1.38 and later at 1.29 but my hemoglobin was at 11.6 showing some anemia.

My third visit to the ER for Lenox Hill Hospital was on 6/13/21.  That blood test listed creatinine at 3.01, BUN at 40 and hemoglobin at 7, normal hemoglobin count for me should be between 13.5 and 17.5.  The ER doctor said ‘I don’t know what’s causing the nosebleeds but you are anemic and we’ll give you a transfusion’.  He started to leave the room and then turned around and said ‘we never see it but it’s on all the medical exams.  I think you might have ANCA Vasculitis.  I’m going to send you to the hospital where they will do a biopsy to determine if it is this Vasculitis.’  He gave me 4 transfusions and an ambulance ride to the ICU.  Because he said that magic word biopsy I was sure this thing was cancer.