10/3/16: Thank you for visiting my site. Back in January of this year, I began having problems with my sinuses and assumed I had a sinus infection. After 3 months of treatment, I was referred to an Ear/Nose/Throat ("ENT") specialist. The ENT was immediately alarmed due to the severe condition of my nasal passages. From there we traveled through many tests and two biopsies. Two specialists considered that my condition might be from Wegener's, but the condition is very rare and difficult to diagnose.
After a VERY long journey, I was finally diagnosed on 9/29 at Cleveland Clinic. Wegener's Granulomatosis (which is now called "Granulomatosis with polyangiitis) is a rare, life-threatening condition that affects primarily the sinuses, lungs, and kidneys.
http://my.clevelandclinic.org/health/diseases_conditions/hic_Wegeners_GranulomatosisThe life cycle of a normal blood cell is 90 days and these cells carry oxygen to the body, including the organs. For an unknown reason, WG causes red blood cells to die and therefore robs the organs of oxygen, causing the organ tissue to die.
The life expectancy of WG patients used to be very short, but early diagnosis and treatment with chemotherapy offers hope to patients, especially if treated before the organs are affected.
As of now, that is all I really know and I have more questions than answers. I've made two trips to Cleveland Clinic and am scheduled to go again on 10/11 for tests and to learn about my treatment plan. If you are interested in following my progress, please check back for updates and thank you for well wishes and prayers. Ultimately, God decides when I will leave this earth and enter heaven, not WG.
