My Journey with Wegener's Granulomotosis
Organized by: Helen Engelhard
I am raising money to help pay for any lingering medical bills and for out of pocket occupational and physical therapy costs incurred June 28, 2015 through the present. As background, in December 2014 I traveled from Detroit, Michigan to Las Vegas, Nevada for a short vacatio which turned into an emergency room visit and eventual nine month debilitating and life threatening rare disease called Wegener's granulomotosis/vasculitis. I spent all of January 2015 in a medically induced coma and eventually had a tracheostomy performed. I was all on dialysis due to the disease destroying my kidneys. My lungs were also compromises and hemorrhaging with double pneumonia and I almost died. In early February by the grace of God I awoke from the coma and was eventually weaned off the ventilator and moved from the trauma hospital to Kindred Hospifal in Las Vegas where I stayed for another month while they fed me and eventually performed occupational and physical therapy and removal of the trach on March 11, 2015. At this time treatment was also chemotherapy but due to violent nausea and vomiting and the threat of aspiration the doctors opted to cease the oral chemotherapy. Incidentally I had also suffered a stage four head ulcer due to the staff's negligence in failing to perform duties including turning the patient every two hours causes hours of pain and suffering throughout the entire nine months of therapy and hospital stays in Michigan and Ohio. I was life flighted to St. John Hospital in Detroit, Michigan on April 2, 2015 completely healed but unfortunately due to not receiving all of the records from Las Vegas, the ER physicians put me back on full dose steroids causing me to blow up like a balloon, suffer hospital delirium and eventually suffer another Wegener's flare up which again damaged my lungs and kidneys and landed me back in the ICU. I spent the end of April and May in and out of the ICU and eventually was transferred to rehab in June. I was released from St. John Hospital to Shelby Nursing Center on June 28, 2014 where I currently reside. I am being discharged home on September 23, 2015.